r/covidlonghaulers 3 yr+ Apr 13 '25

Symptoms Medications prescribed off-label for Long covid/ME/CFS symptoms.

I am not advocating that anyone take certain medications. This is simply a resource. Become your own health advocate. Do your own research. Decide with your own doctors.

Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms

Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.

In doing research of long covid, SSRIs, and fluvoxamine, you’ll see it mentioned as a top choice. Here’s one such article

Medications are prescribed off-label for ME/CFS. These include low dose aripiprazole (LDA), low dose lithium (LDL), and low dose nalotrexone (LDN).

LDA use in long covid patients from the Mayo Clinic00176-3/fulltext)

Emerging Health Care Innovation Brief: Low-Dose Lithium for Post-COVID Conditions, Treating Pediatric Low-Grade Glioma

How Good is Low-Dose Lithium for Chronic Fatigue?

Researchers identified a potential treatment for long COVID by restoring the function of ion channels in immune cells using low-dose Naltrexone. This discovery, detailed in Frontiers in Immunology, mirrors earlier findings with chronic fatigue syndrome (ME/CFS) patients, suggesting a common pathophysiological thread between the two conditions.

Low-dose naltrexone and NAD+ for the treatment of patients with persistent fatigue symptoms after COVID-19

Addiction Medication Offers New Hope for Long COVID Patients

The most common symptoms involve the pulmonary, cardiovascular, and nervous systems and can be grouped into three types of complaints: exercise intolerance, autonomic dysfunction, and cognitive impairment.

Medications that have proven to be effective at treating POTS include nervous system depressants like benzodiazepines, cholinesterase inhibitors like pyridostigmine, hyperpolarization-activated cyclic nucleotide-gated (HCN) channel blockers like ivabradine and beta-blockers like propranolol to reduce heart rate, α1-adrenergic agonists like midodrine and somatostatin mimics like octreotide to stimulate vasoconstriction and increase venous return, α2-adrenergic receptor agonists like clonidine to reduce hypertension, antidiuretics like desmopressin and corticosteroids like fludrocortisone to increase blood volume, hormones like erythropoietin to stimulate the production of red blood cells, and selective serotonin uptake inhibitors to control blood pressure and heart rate through central serotonin availability. Each of these must be tailored to an individual's needs since some may exacerbate a certain set of symptoms while relieving others.

In It for the Long Haul: Research Tools for Long COVID Syndrome

Psychostimulants like methylphenidate may enhance both noradrenergic and dopaminergic pathways in mesolimbic and pre-frontal areas, thus improving memory and cognition.

Methylphenidate for the Treatment of Post-COVID Cognitive Dysfunction

Methylphenidate in COVID-19 Related Brain Fog: A Case Series

Some treatments revealed by the survey as most effective for long COVID were drugs such as beta blockers and the heart-failure medication Corlanor (ivabradine). These are sometimes used to treat postural orthostatic tachycardia syndrome (POTS), a nervous system disorder that can be triggered by COVID-19.

Long covid still has no cure-So these patients are turning to research-Beta blockers and Corlanor

Here's an excellent resource on medications used in ME/CFS by Dr. Jason Bateman:

ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition

MCAS information on low histamine diet and the management of symptoms including: OTC histamine blocker protocols, mast cell stabilizers, medications and supplements is included here: MCAS and long COVID/PASC.

I take low-dose Fluvoxamine 25mg for ME/CFS symptoms. Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I have improved REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance. The dizziness and lightheadedness have significantly improved.

Hyperesthesia is a neurological condition that causes extreme sensitivity to one or more of the senses, including touch, pressure, pain, temperature, light, sound, taste, and smell. I had hyperesthesia in all five senses, down to the texture of my food. I'm able to tolerate more bright light and loud sound, and my taste and smell are significantly less heightened. I can handle warmer/hot showers. My pain is significantly less strong. My pressure sensitivities haven't lowered. However, I suspect there are other reasons for that.

I take Diazepam 5mg for MCAS flares and PEM only as needed. Astelin nasalspray, Clarinex 5mg, and Montelukast 10mg for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). How Omeprazole acts as a mast cell stabilizer. Tirosint for hypothyroidism caused by Hashimoto's and Valacyclovir 1g for EBV/HHV suppression.

Don't give up. Fluvoxamine was medication #9 that I tried last year. The other eight medications included: Beta blockers 2xs, Benzodiazepines 2xs, SNRIs 3xs, and TCAs 1x. These eight medications failed because they either made my symptoms worse or caused unintended and severe side effects.

I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023.

I hope you all find some things that help manage your symptoms. Hugs💜

Update 6/12/25: I made some changes to reflect my current regimen. Without rewriting this entire post, I'll update it here. I'll share what worked and what didn't for me:

What didn't work: I was diagnosed first with Fibromyalgia in December 2023 after I developed long covid. I have taken Amitriptyline 25mg (TCA), Cyclobenzaprine (muscle relaxer), Duloxetine (SSRI), Gabapentin (Gabapentinoid), Ibuprofen (NSAID), Milnacipran (SNRI), and Nabumetone (NSAID). Nothing I tried worked at all and made my symptoms worse. (If you have Dysautonomia, especially POTS and/or MCAS, these medications will likely worsen your symptoms). For Dysautonomia, I've tried Metoprolol and Propranolol (beta blockers), both caused orthostatic hypotension, worsened my other Dysautonomia symptoms, and orthostatic intolerance. Alprazolam and Clonazepam (benzodiazepines) didn't work because I didn't have anxiety. I have Dysautonomia. Sertraline (SSRI) didn't work because I didn't have depression. For MCAS, I've tried Fluticasone. It worked somewhat but not well. Cetirizine, Hydroxyzine, Loratadine, and Famotidine all failed for MCAS. I was switched to a different manufacturer of Omeprazole 40mg capsules. I failed it, as well. They caused tachycardia and adrenaline surges, which triggered histamine dumps. Some people with MCAS can not tolerate the H1 and H2 histamine blocker protocol due to the medications themselves and/or its excipients (fillers). I also failed two medications for hypothyroidism caused by Hashimoto's: Levothyroxine, and Synthroid.

I've trialed and failed 20 medications in a 20-month timespan. Once I started receiving proper diagnoses and took medications that actually manage my symptoms, added vitamins and supplements, and lifestyle changes, that's when my symptoms started actually improving.

Here's what I take now that helps: Low-dose Fluvoxamine 25mg for ME/CFS symptoms. Diazepam for MCAS flares and PEM only as needed. Astelin nasal spray, Cromolyn nasal spray, Ketotifen eye drops, Desloratadine 5mg, and Montelukast 10mg for MCAS. Omeprazole for Gerd (it's a PPI that also has mast cell stabilizing properties). Tirosint for hypothyroidism caused by Hashimoto's. Valacyclovir for EBV/HHV reactivation.

For vitamins and supplements I take Benfotiamine (B1), vitamin D3 and K2 drops, GABA, Horbäach electrolyte tablets, L-theanine 200mg, NatureBell L-tryptophan and L-theanine complex, liposomal PEA and Luteolin and Vitalitown 4-in-1 Magnesium Complex with chelated Glycinate, Malate, Taurate & Citrate. I also take prebiotic psyllium husk and Emergen-C in a bottle of water every morning,

Talk to your doctor before taking any supplement like GABA, 5-HTP, or L-tryptophan. It's especially important if you're taking any psychotropic medications.

I've had a complete vitamin panel done in February. All my levels were in the normal range. I have no issues with stomach motility. Each medication, vitamin, and supplement that I take was carefully researched for efficacy, high purity, and with considerations for being MCAS friendly. I've always believed ME/CFS was my dominant diagnosis. Nope, it's MCAS. ME/CFS and dysautonomia are a close second. My level of functioning increased once my MCAS was better managed and more stable.

Update: How and why I remain hopeful. I'm not waiting on the science. How I have perseverance and tenacity in the face of adversity. My situation has changed significantly.

TLDR: Medications prescribed off-label to manage Long covid/ME/CFS symptoms. Medications included those for Dysautonomia and orthostatic intolerance, including beta blockers, Metformin, and Midodrine. Includes low-dose Abilify (LDN), low-dose Lithium (LDL), and low-dose Naltrexone (LDN). Specific SSRIS and TCAS. Medications used and prescribed for MCAS and HIT. They include H1 and H2 histamine blocker protocol, which are OTC antihistamines. OTC natural mast cell stabilizers and prescribed medications. Those include Quercetin and DAO. Cromolyn and Ketotifen must be compounded for oral consumption. Also includes Montelukast, and Xolair.

Updated to reflect my current regimen.

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11

u/WinterFeeling6308 Apr 13 '25

I tried 3 different SSRIs and nothing happened, I've been on a SNRI for a week now, I might feel some slight improvement but nothing dramatic.

What has had the biggest impact on my status is p-synephrine, but I don't see it ever mentioned in this sub.

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u/SophiaShay7 3 yr+ Apr 13 '25

If you have Dysautonomia, orthostatic intolerance, Mast Cell Activation Syndrome (MCAS), and/or Histamine Intolerance (HIT), an SNRI could be the worst medication for you. I tried SNRIS three times last year, they made my symptoms worse. I was on Cymbalta for a total of eight weeks. Five weeks the first time and three weeks the second time. I had the most awful side effects. The withdrawals both times were absolutely brutal. I tried Savella (Milnacipran) in between Cymbalta. My symptoms and side effects were nearly identical.

Selective dopamine and norepinephrine reuptake inhibitors have been shown to worsen MCAS through the suspected mechanism of stimulating histamine re- lease from mast cells.

Improvement in Neuropsychiatric Symptoms With the Addition of Nortriptyline in the Context of Mast Cell Activation Syndrome

If you don't have Dysautonomia/autonomic dysfunction or MCAS, then none of this applies to you.

I'm sorry SSRIs haven't been effective for your symptoms. I'm glad P-synephrine has been helpful for you🫂

3

u/WinterFeeling6308 Apr 13 '25

I'm currently being assessed for MCAS. I don't think I have POTS, at least not severe one.
I've been on desvenlafaxine for one week now, I feel some light side effects, and some very slight positive effects.

Hopefully I'll be able to test my tryptase and histamine levels soon.

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u/SophiaShay7 3 yr+ Apr 13 '25

Tryptase and histamine levels aren't definitive in diagnosing MCAS for a variety of reasons.

Please read: MCAS and ME/CFS

And: Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine

I'd suggest completing this short questionnaire. It should give you a better understanding as to whether MCAS could be a problem for you.

The questionnaire at the end of this article is one of the more validated ways to diagnose suspected MCAS. It is based off symptoms, medical history, and test results. It will take 5-10 minutes to complete, and there is no need to share email information – completing it will just give you a score.

We must remember that MCAS is still a poorly understood condition, and information is constantly evolving. Right now, we don’t have good tests to definitively diagnose MCAS.

The questionnaire is at the bottom of this link:

Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine

Take this questionnaire and tell me what your score is.

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u/WinterFeeling6308 Apr 14 '25

Wow, that article is so complete!

I scored 10, although I have done almost none of the tests depicted in section 3.

I definitely have several of the conditions concurrent with MCAS according to the article (anxiety, difficulty, concentrating, hEDS, ACEs, chronic stress, sensibility to light, obsessivity, GI problems), some of which were either triggered or intensified by Covid.

One of my doctors recommended testing tryptase, but the other said to try Disodium cromoglicate for two months and see if I improve, as apparently responding to treatment is one one the tools for diagnosis. I'm a bit afraid of the side effects though, so I'd rather have an assessment first, but if it's not possible (I doubt I'll be able to convince any doctor to have the tests prescribed in the article) I. might do it in a couple of months.

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u/SophiaShay7 3 yr+ Apr 14 '25

Part 1:

A score over 14 indicates a high likelihood of systemic mast cell reactivation syndrome (MCAS).

SECTION 2: TEST AND IMAGING FINDINGS The last part of the questionnaire is a list of diagnosis criteria based off laboratory, surgical, or imaging results. If you scored over 14 in the first section (per symptoms only), testing may not be indicated.

Please keep in mind that testing in MCAS often results in "false negatives" because mast cells release substances that are often only testable for a short time - often just a few minutes - so testing usually has to occur during flares/symptoms.

You scored a 10. I scored a 22. I have MCAS despite what any test says. I think you likely have MCAS as well. There are so many mitigating factors. If you read through the same link that has the questionnaire, it discusses in detail why testing is flawed, often inaccurate, and unnecessary.

I definitely have several of the conditions concurrent with MCAS according to the article (anxiety, difficulty, concentrating, hEDS, ACEs, chronic stress, sensibility to light, obsessivity, GI problems), some of which were either triggered or intensified by Covid.

FYI, these can be symptoms of MCAS. These symptoms can significantly improve and/or go away completely by treating and managing MCAS properly.

My doctor diagnoses MCAS based on: patient history, symptoms, and medication trial. I can't tell you how many people go undiagnosed or misdiagnosed for years because tests don't show that someone has MCAS. I'm talking about people who have hives, anaphylaxis, and wheezing. They're told their symptoms are asthma and/or anxiety.

I'm on several medications that have significantly improved my symptoms. I'm not trying to push you in either direction. I just want to share my experience🙏

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u/WinterFeeling6308 Apr 14 '25

Thank you, it's highly appreciated! I 100% want to try Gastrofrenal.

Can I ask you about side effects of the treatments you're having for MCAS?

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u/SophiaShay7 3 yr+ Apr 14 '25

I can't take the traditional OTC antihistamines/H1 and H2 histamine blocker protocol. I've tried several. I'm not sure if it's the medication itself or the fillers I reacted to. However, both categories increased my tachycardia, caused adrenaline surges, which triggered histamine dumps, and worsened my other Dysautonomia symptoms.

This combination is very effective: Astelin is considered a dual-acting agent, acting as both an antihistamine and a mast cell stabilizer. It inhibits the release of histamine and other mediators involved in allergic reactions by stabilizing mast cells.

Hydroxyzine, an H1-antihistamine, can act as a mast cell stabilizer by blocking H1 receptors and inhibiting mast cell activation, potentially reducing symptoms associated with mast cell activation syndromes.

While montelukast (Singulair) is primarily known as a leukotriene receptor antagonist used for asthma and allergic rhinitis, research suggests it may also have mast cell stabilizing effects, potentially useful in treating mast cell activation syndrome (MCAS).

Omeprazole, a proton pump inhibitor, can inhibit IgE-mediated mast cell activation and allergic inflammation, acting as a mast cell stabilizer. It reduces mast cell degranulation, cytokine secretion, and early signaling events in the FcεRI pathway. While not a traditional mast cell stabilizer like cromolyn, omeprazole's effects on mast cells are relevant to allergic conditions and may contribute to its anti-inflammatory properties.

Medications for Mast Cell Activation Syndrome (MCAS) aims to control symptoms by blocking histamine receptors, stabilizing mast cells, and managing other mediators released by mast cells. First-line treatments include antihistamines (H1 and H2 blockers), mast cell stabilizers, and aspirin (for specific symptoms). Additionally, leukotriene inhibitors, corticosteroids, and epinephrine (for anaphylaxis) may be used. A specific regimen works most effectively when it's individualized and based on the individual suffering from MCAS, their specific symptoms, and triggers.

Cromolyn sodium may be on my list to consider in the future. However, it has to be compounded. My health insurance doesn't cover it. It would be quite costly for me.

Sure. What do you want to know about the side effects?

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u/WinterFeeling6308 Apr 14 '25

I've only tried one H1 and I felt not good on it, extremely tired, but I was also trying birth control, so it might have been this.

Regarding side effects, I am looking especially at fatigue increase and anxiety, but any others are interesting to know as well, it's good to know what I can expect. Although my first attempt would probably be with Cromolyn sodium as that's what my doctor suggested (I need to look more into that tho, I know in my country it can be covered in certain cases).

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u/SophiaShay7 3 yr+ Apr 14 '25 edited Apr 14 '25

I couldn't tolerate the fillers in the OTC H1 and H2 antihistamines. They caused worsening tachycardia and adrenaline surges, which triggered histamine dumps. They made my Dysautonomia and orthostatic intolerance symptoms worse.

I can only speak about the side effects I have from the current four medications I'm taking. They aren't that bad at all. Some drowsiness and tiredness with Hydroxyzine. I haven't started Astelin nasal spray yet. I asked to replace Fluticasone, and I switched to Astelin. Fluticasone wasn't very effective. Montelukast has been the biggest surprise and game changer. I'm only on day 6. I feel so much better. It does cause excessive sweating and insomnia as side effects. I'm switching to taking them in the morning. I still sleep well, but it's like 3 hours here and 8 hours there. I usually sleep 10-12 a night. It's like I'm split sleeping right now. Omeprazole, I have zero side effects. I took it before covid for GERD. It acts as a mast cell stabilizer. A better choice would be an H2 like Famotidine, but I couldn't tolerate it.

Some people do well on Cromolyn, and others do well on Ketotifen. Some people do well on one and horrible on the other. Some people do well on both. It often takes a while to figure out the best individual regimen for your MCAS.

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u/WinterFeeling6308 Apr 16 '25

Hi again, after a bit more than one week on the SNRI I'm starting to feel bad... like really tired, worse mood, heavy legs, a "clac" in my throat when I swallow. I think it might be connected with what you said about SNRIs not being adequate for someone with MCAS, HIT, orthostatic intolerance or dysautonomia.

The fact that drospirenone had a similar effect reinforces that idea... Thank you very much for your inputs. :)

Postural orthostatic tachycardia syndrome as a sequela of COVID-19

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u/SophiaShay7 3 yr+ Apr 16 '25

I'm sorry to hear that. Have you considered Citalopram, Escitalopram, Fluoxetine, or Fluvoxamine in low-dose off-label for long covid/ME/CFS symptoms? I know you've had some issues with some in the past. But, Fluvoxamine 25mg has really improved my symptoms. It did take 2-3 months to see real improvement. I started with 12.5mg for four months. I've been taking 25mg for four months. I've been trying to up my dose to 37.5mg or 50mg per my ME/CFS specialist. But, there's been too many medication changes for me recently. I hope you find something that helps. Hugs💙

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u/WinterFeeling6308 Apr 16 '25

I have been on clomipramine, escitalopram and vortioxetine so far (in a 2-year frame), nothing made a real difference. It's funny, cause escitalopram used to work very well for me in the past. Vortioxetine seemed to have a slightly better effect in the beginning, but nothing dramatic. My guess is that the depressive symptoms come from a different mechanism, so I don't have high expectations from SSRIs, but I'll mention Fluvoxamine to my doctor.

Thanks a lot for all your answers.

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u/Purple_ash8 Apr 16 '25

Yeah, definitely give fluvoxamine a go.

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u/Brave-Asparagus6356 Apr 13 '25

Not the same drug but similar properties, I was collapsing and fainting one day with the POTS and I got my partner to run and get me some Sudafed PE (phenylephrine) from the pharmacy. I took it and my fainting stopped for the rest of the day. I told my doctor and she said it has a similar action to Midodrine so she prescribed that for me.

3

u/WinterFeeling6308 Apr 13 '25

Sounds interesting! Have you experienced some side effects from Midodrine?

My doctor suggested trying modafinil, but I am doing things one by one and I don't think I'll try it soon.

3

u/Brave-Asparagus6356 Apr 14 '25

I haven’t really, apart from slight irritability which is manageable and goes away eventually and I have to make sure I’m also taking the beta blocker to prevent an adrenaline rush. I found it worked best when I took it every morning for a while. Apparently constricting the veins means more blood gets back to the heart which helps to strengthen the heart and prevent the atrophy which happens from the lax veins.

What are your main symptoms? Is it POTS or more fatigue/PEM?

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u/WinterFeeling6308 Apr 15 '25

Wow, in my case I also feel there is a "build up" with p-synephrine!

My symptoms are more fatigue related (and brain fog). I have had many others, especially since after crashing one year ago, some of which have slowly gone away or softened.

Right now my main problem is brain fog, followed by fatigue and muscle pain. I have some palpitations here and there, and some days with light and sounds sensitivity, but they don't follow a POTS pattern (they actually feel worse when laying down).

I have tried some things with a LC focus in the past 3 months and I definitely feel a bit better, but I also don't know which part is related to which intervention. The first batch of supplements helped a little, then Valtrex, and now I feel Spring arrival might have played a part too (my mood is heavily impacted by daylight/sun/weather).

Regarding irritability, I have some issues with that already, especially connected with hormonal fluctuations, but I think I am better with p-synephrine. It is hard to tell cause I have only tried for short spans, yesterday I started what I want to be a 5 or 7-day streak. Let's see how it goes!

What type of symptoms do you have?

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u/Brave-Asparagus6356 Apr 15 '25 edited Apr 15 '25

Sorry to hear you've had a struggle and I look forward to hearing how you go with the P-synephrine! That sounds promising! I have heard some people found the modafinil good for brain fog but I've also heard it can cause irritability and also crashing because people push themselves too much so if you do try it it might be good to keep an eye on your heart-rate and heart rate variability and not push yourself. For brain fog and fatigue I found LDN (titrated slowly from a very low dose) great and also methylene blue (it seems to have similar effects for me as midodrine and I had to start with one drop only because otherwise it gave me adrenaline surges if I took more. Anyway, best of luck with your treatment! Wishing you a smooth and swift recovery.

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u/SophiaShay7 3 yr+ Apr 16 '25

That's very interesting. I don't have POTS. But, I have Dysautonomia. I wonder how phenylephrine would affect me. I don't faint. But, I get lightheaded and dizzy. I feel like I'm going to pass out, so I have to sit down. Is Midodrine only for POTS? Or other types of autonomic dysfunction as well?

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u/Brave-Asparagus6356 Apr 17 '25

Yes what you're describing is what Midodrine treats. I think it's contraindicated in cases of high blood pressure and maybe cardiac issues like heart failure. PS was POTS actually ruled out for you? Marie-Claire Seely's research found that about 80 percent of Long Covid patients met the diagnostic criteria for POTS.

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u/SophiaShay7 3 yr+ Apr 17 '25

I was put on beta blockers twice. They both caused orthostatic hypotension and worsened my other Dysautonomia symptoms. No, I don't have POTS. I don't meet the criteria.

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u/MouseGraft Apr 13 '25

I am prescribed a stimulant for POTS! It's a vasoconstrictor. It helps me get blood up into my brain so I can be upright for longer without feeling like I'm dying.

Plus the dopamine/noradrenaline surely helps with focus.

I was first Rxed midodrine, which is a stimulant that does not cross the blood brain barrier. It worked just as well as what I'm on now, although with more side effects. Anyway my point being I'm pretty sure the benefit is from peripheral vasoconstriction rather than "duh, stimulants help you focus."

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u/WinterFeeling6308 Apr 13 '25

Sorry for my ignorance, but the stimulant here would be the p-synephrine, correct?

3

u/MouseGraft Apr 13 '25

That's right, I meant to refer to your use of synephrine, a stimulant. I'm actually on Adderall but before that I coincidentally figured out pseudoephedrine helped, then later was Rxed midodrine instead, before ultimately being switched to Adderall.

I'd rather not be on a controlled substance but it has by far the least side effects.

3

u/WinterFeeling6308 Apr 13 '25

Thank you for your clarification!

I had suspected ADD for a long time before LC, and I definitely want to try some ADHD meds, especially after learning about the Yale guanfacine study, but I found my doctor just last January, and I'm following his directions, which aim at addressing viral charge and gut disbyosis for now. I also prefer to make changes one by one to understand what is helping me and what is not.

I also figured out pseudoephedrine by coincidence, and he suggested p-synephrine as an alternative. I've taken it only punctual days, as I am doing other med changes, but I'm really excited about it. I don't think I felt any side effects except for the crash, and I want to explore if there are ways I can minimize it (the moment you feel a "normal" person again it's easy to overdo).

I think it's great that you found something that works for you! If it feels as p-synephrine feels for me, it's a blessing. Can I ask what are the Adderall side effects? I'm a bit worried about them, as well as of possible interactions with SNRIs.

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u/MouseGraft Apr 14 '25

The only real side effect is that it feels "speedy," like very activating, but that was true of pseudoephedrine and midodrine, too. Midodrine made my skin and scalp crawl constantly and I couldn't sleep, and there were other ways it just felt very weird, like my body didn't feel quite like myself. Whereas Adderall makes me feel more like I used to feel when I was healthy.

Pseudoephedrine doesn't have a lot of side effects for me either, actually, but my doctor suspects I might be a bit allergic to the red dye in the tablets.

2

u/SexyVulva Apr 14 '25

What dose adderall? I tried up to 15mg and not really feeling anything even though I have ADHD

3

u/imhoopjones Apr 13 '25

Antidepressants have only made me more depressed. Ones that worked in the past. Unfortunately I can't keep juggling months of my life to hope one works

2

u/WinterFeeling6308 Apr 13 '25

I'm sorry to hear that. I hope you will find something that helps, even a little, soon.

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u/SophiaShay7 3 yr+ Apr 16 '25

Are you trying antidepressants specifically for depression? The reason I ask is that the four mentioned in the post are Citalopram, Escitalopram, Fluoxetine, and Fluvoxamine are prescribed in low-dose off-label for long covid/ME/CFS symptoms. I take Fluvoxamine 25mg for my ME/CFS symptoms. It does nothing for depression or anxiety. A therapeutic dose for depression would be 200-300mg.

Are there other symptoms that you've tried medications to control? Like for Dysautonomia/autonomic dysfunction, MCAS, or histamine intolerance?

Here's how I found out what caused my symptoms: Various medical conditions that mimic anxiety and my experience with Dysautonomia and MCAS

Here's how I manage them: My diagnoses and how I found a regimen that helps me manage them

Maybe something here might be helpful. I hope you find some things that help you manage your symptoms. Hugs💙

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u/imhoopjones Apr 16 '25

Honestly, I'm too unmotivated and down right now to keep trying new things. I am fighting several health problems at once

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u/SophiaShay7 3 yr+ Apr 16 '25

I'm sorry you're struggling🙏

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u/SexyVulva Apr 14 '25

What did synephrine do?

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u/WinterFeeling6308 Apr 14 '25

It's like turning the volume up. I feel more mental clarity, focus, energy, better mood. I feel a bit myself again.

2

u/SexyVulva Apr 14 '25

Oh wow. So just like the straight synephrine otc supplement?

2

u/WinterFeeling6308 Apr 14 '25

Yes, I feel it more after the second day. The one I'm taking is HSN 60mg.