Anywone Worse On Ssri's?

[redoctober]

I searched around before posting this...but does anyone feel WORSE on an SSRI? I tried Zoloft a couple of months ago...made me feel MORE dizzy, and I actually noticed the veins on my hands/arms were larger when on Zoloft. Not sure why this is the case...but I'm sure there's an explanation for it.

Anyone else?

[icesktr189]

How long were you on it for? It can worsen OI in the beginning. I didnt get any improvement of POTS symptoms until about 6 to 8 weeks. It took about a total of 6 months before it really showed marked improvements. I took lexapro, which is very activating. Also, low doses are highly recommended because the higher ones can also worsen OI.

[redoctober]

How long were you on it for? It can worsen OI in the beginning.

I gave Zoloft about a week or two @ 25mg (??)...then crawled to my Cardiologist looking for answers. It definitely dilated the veins in my hands MORE than normal. He recommended stopping it.

[icesktr189]

Yeah a lot of people have a horrible time in the beginning (myself included) My cardiologist told me that unless I was having a severe reaction or dying to give it at least 6 weeks. The first two were definitely the worst. I had adrenaline surges, burning skin, lower bp's, vision issues, the whole nine yards. I am on week 4 and feeling a lot better, but still not there yet. Last time it took me awhile to get benefits from it.

[HopeSprings]

I haven't tried SSRI's for POTS, but took them in my early 20's (before I was ill) for some anxiety stuff. I had some difficult side effects and the withdrawal was horrendous. I believe that this class of drugs and/or the Klonopin may have triggered my initial illness - my "CFS" or whatever we're calling it. I was not SICK until I started with the "psych" meds. I wouldn't go near an SSRI or a benzo with a ten foot poll. This was MY experience and many other people that I know of - however, I'm sure many people feel they are helped by them.

[janiedelite]

I'm on my 8th week of paxil. I started at 12.5mg of the paxil CR. Yes it took a couple of weeks for the horrible initial side effects went away. However, I started to have some days of decreased fatigue and nearly normal BP/pulse! I'm normally hyperadrenergic and have high BP. So I bumped up to 25mg/day (which is considered the lowest therapeutic dose) and at the 4th week on this dose began havingorthostatic hypotension. Now I bumped back down to 12.5mg a day. This is the only med I've been on that took away all of my chest pain and tightness, as well as has reduced alot of my neuropathic pain. I haven't been able to take midodrine in the past because of Raynaud's (brought on by POTS) and my feet would be permanently dusky and painful on the midodrine. Now I take low doses occasionally and feel like I finally have a decrease in the brain fog.

I've never tried an SSRI before. My doctor did her training under Dr. Grubb and is willing to try various treatments for me in addition to the SSRI like epogen, octreotide, DDAVP, etc. I feel very fortunate to have a doc who's willing to muddle with me through this mess!

FYI, I've never been diagnosed with any mental health disorder and have only been praised by my docs for how well I've coped. There was one physiatrist who suggested I get counseling when he heard of the meds I was on, but I was already in counseling at the time (I referred myself to get pain coping strategies). I didn't see him again.

[songcanary]

Naomi,

Your comment was interesting to me because I was never 'sick' either until I quit Klonopin 0.5 and doxepin 30 cold turkey after having been on them for 12 years for fibro. I just wasn't doing well at the time and so I got impatient and dumped them both.

My dysautonomia symptoms started six months later (that I finally noticed lol). I have since wondered whether I caused my own illness because of that. I am now back on doxepin and love it, but not Klonopin.

[icesktr189]

DO you think that being on the SSRI was just hiding your POTS symptoms and that is why you got "sick" after? I thought I was almost cure of POTS until I got off my SSRI and all my symptoms came back. But I cant blame the SSRI for POTS because I took it after I came down with it.

[Darlene]

I had always been healthy, my brother passed away, and was put on the max amount of zoloft, after 6 months maybe a year, I quit cold turkey, and this is when I noticed my symptoms too.

[icesktr189]

Well quitting cold turkey with SSRIs is complete ****. I know withdrawal symptoms can last for a year. My mom waned pretty slowly and still had horrible symptoms. I am in no way saying you dont have POTS (of course you do, but I have seen in forums with people passing out from the withdrawl.

[kjd111]

My daughter was on SSRI's for a while right after she got sick, but before we knew that she had NMH. They made things much worse for her. I think it depends on what is driving the POTS/NMH. In hindsight now, knowing that my daughter doesn't have enough norepinephrine and her body doesn't constrict the blood vessels well at all, SSRI's were a terrible choice. We weaned her off them, but probably faster than one should. She had bad withdrawal for a while, but nothing like what i have read about from others - thank goodness.

I think any drug that alters the activity in your brain warrants careful thought before trying. I understand they are a great help for some though.

[janiedelite]

A friend of mine took zoloft for a decade and weaned off too quickly. For the next 6 months she had bouts of orthostatic hypotension, mood swings, and feeling faint even though she's never had this problem before. Once the six months were up, she never had this problem again. I do think that SSRI's may have been prescribed too liberally by docs. Now it's coming to light how difficult these meds are to get off of, pregnancy risks, etc.

For me, I've had POTS for 5 years and have tried all of the other less risky drugs. I have weighed the risks and am willing to try SSRI's in the smallest dose possible to get some symptom relief.

[juliegee]

Naomi,

Your comment was interesting to me because I was never 'sick' either until I quit Klonopin 0.5 and doxepin 30 cold turkey after having been on them for 12 years for fibro. I just wasn't doing well at the time and so I got impatient and dumped them both.

My dysautonomia symptoms started six months later (that I finally noticed lol). I have since wondered whether I caused my own illness because of that. I am now back on doxepin and love it, but not Klonopin.

SC-

Doxepin is often used in mast cell disorders. What symptoms do you take it for? It is an old fashioned antidepressant with strong antihistamine properties. Glas you found somehting that works.

Julie

[juliegee]

I think Dani is right on the money. Many people with dysautonomia have very severe symptoms for the first few weeks. My son was literally incapacitated for the first two weeks at the smallest possible dose. He would shake, vomit, experience near syncope, etc. He pushed through it & has gotten much better because of it. Lexapro is one of his most important meds.

[redoctober]

In hindsight now, knowing that my daughter doesn't have enough norepinephrine and her body doesn't constrict the blood vessels well at all, SSRI's were a terrible choice. We weaned her off them, but probably faster than one should....

I'm curious...did you try any Norepiniphrine reuptake-inhibitors? My experience is similar to your daughters...my conditions worsened on an SSRI (Zoloft)...although I only gave an it two weeks before I bailed.

[shoegal]

I have PTSD and my doc thinks an SSRI would be good, what is your advice folks? I have low BP, neuopathy and lots of other stuff that could autonomic, we aren't sure yet. I do have IST and take a beta blocker.

I took prozac years ago and had to take 100mg a day and needed a benzo to help me sleep as the neuopathy got much worse

[songcanary]

Julie,

I take doxepin for fibromyalgia. It is supposed to help with sleep, but it really doesn't do a good job anymore. I only stay on it because of my food allergies. I know it helps blunt the hive reaction if I get blindsighted. I do take food drops for 11 foods so I don't starve!

I recently had my tryptase level checked and of course it is normal. I still suspect an MCAD component but right now I am doing pretty well so I'm just hanging tight.

[juliegee]

SC,

With doxepin you are treating it if you have it You can still have MCAD with a normal tryptase level- that just rules out mastocytosis....although Godsgal still had mastocytosis with a normal tryptase level

Julie

[songcanary]

Julie,

I know, isn't it crazy with the tryptase? Seems to be fussy So you are saying that doxepin by itself can treat MCAD? Now that makes me feel better because I really suspect that I have it, just no way right now to officially diagnose it. I do have a wonderful allergist who is hip to masto, but maybe not MCAD so much. He is very open minded, though. Maybe I'll pick his brain again one of these days.

[juliegee]

SC-

It'd be best of you could also take an H-2, like zantac or ranitidine. Something about combining an H-1 (like doxepin) and an H-2 is more effective. H-2's are OTC and very benign. Ask your doc about adding it to your regimen. IF it makes a difference- may be further evidence of MCAD.

For the record, I am not DXing you. I am not a doctor . Just noticed that you were using doxepin-commonly used in treating mast cell disorders. Made me wonder...

All the best-

Julie

[songcanary]

Julie, I know you're not DX'ing. I like reading your posts because you always have good tidbits and I usually learn something. Thanks for your input.

[icesktr189]

Problem with SSRIs are that take take a long time to work and a long time for the side effects to go away. Two weeks just is not enough to gauge how you are going to do permanently on them. It takes AT LEAST 6 weeks, most of the time more to know the true effect it will have, especially if you are dealing with dyautonomia Also, very common for the beginning month to totally be a living ****. I just passed my month mark and still feel kinda bad. Last time it took me months to gets benefits from it. The only reason i didnt stop before was because i didnt want to withdrawal from it, and thankfully it really helped me out the most.

[Yolaclover]

I'm on zoloft 50mg for about a year. I'm not sure if it helps, Dr. wants me to switch to something else. It does help my anxiety, that's for sure, but maybe it makes my POTS worse? My problem is the very low BP.

[redoctober]

I wonder...are there any early signs that might indicate if a particular SSRI is going to work or not? How many have experienced WORSENED symptoms early on...only to find much better overall improvement 4-5 weeks later?

Edit: Also found this (My linkhttp://www.ncbi.nlm.nih.gov/pubmed/17445831)

"From a safety perspective, significantly more venlafaxine (Effexor)-treated patients (n = 4) than duloxetine (Cymbalta)-treated patients (n=0, P =.047) experienced sustained elevations of systolic blood pressure during the fixed dosing period...."

So, that would suggest evidence that Effexor was more effective at boosting BP at those doses.

[samannran]

I took Zoloft for two months and felt terrible the entire time. Low bp, dizzy, and I felt like I was walking around in a dream. I was switched to Lexapro & gained ten pounds almost immediately. I took Effexor for a few years and had good results with it after the first few days of severe nausea. I recently was diagnosed with fibromyalgia and switched to Cymbalta to help with pain. So far, I haven't experienced any side effects.