s-pot

Thank you for your responses. I am reading great things about SSRIs/SNRIs wit pots and it seems to be quite effective for some people alright. I have gotten so unwell and alot of symptoms since coming off them a year ago and now with a definate diagnosis I think its clear that the Cymbalta was v effectively treating POTS for me for a long time! I think i will too give it a go in combination with the Midodrine now. When coming off them a year ago I had to literally open the capsule and take out 3mg of 30mg dose weekly and replace all the little beads bak in the capsule! it was a nightmare and took about 10-12weeks to get off them...ive just gone from bad to worse since! Any advice re dosage? What dosage are ye taking? and would it be effective to just take one every 2nd/3rd evening? id like to try the minimum dosage possible to start and see the effect....if it dont respond with a good improvement in symptoms now i probably wudnt be happy to say on them for long!

Just wondering what peoples opinions are on SSRI for helping with POTS.Ive read various different peoples experiences with them (mostly positive) and would like to get an idea on what ye guys think the pros/cons of using this type of medication for pOTS are? I saw consultant last week and he was recommending I go on this for treatment of POTS. Just to fill you in slightly on why he recommended this....at age 15 (now 25) i became very unwell for a year, no one could find out what it was (when i thnk bak had alot of POTS symptoms, recurrent infections extreme fatigue) and instead of investigating further when the obvious didnt fit, it was decided that i had Generalized anxiety disorder/depressive disorder and was psychosymatic (none of which fitted my tendacies/personality at that time, i was just extremely weak and worn down by physical illness). To cut a long story short I was put on SSRI with this psychiatric opinion and started to improve (which confused and upset me, the psychiatric labelling made me question everything I experienced or believed about myself and the improvement in my physical health confirmed their diagnosis!) However over the following 8 years it was extremely difficult to get off the medication, anytime i tried I would feel horrendous physically and end up going back on the SSRI. i questioned this several times but was told I would need them for life! (which i couldnt accept at such a young age). In 2006 a psychiatrist attempted to take me off them, I developed seizures which i would have up to 15 times a day and other symptoms now i kno clearly were POTS symptoms. Once back on the SSRI this all subsided again. 2 years ago another new psychiatrist was v supportive in aiding me get off the meds...i had developed muscle spasms, twitching and some other symptoms. It was thought long term usage of SSRI was affecting me and psych said i had the most severe case of Serotonin withrawl syndrome he had ever seen. However i now believe that all the symptoms that were put down to Serotonin withdrawl was actually POTS and i believe i had it from the age of 15 but the SSRI treated it quite effectively. In the year since i have been completely off the drug my physical health drastically deteriorated, i have poor quality of life, v poor energy and have hadto take a year out of college. Its been very difficult to get my diagnosis but a TTT confirmed POTS back in march, with a 3 day holter monitor showning arrythmias and inappropriate sinus tachycardia. I was started on Midodrine 15mg p/d which has shown a great improvement but nowher near where i need to be and the quality of life i had while on the Cymbalta. I am so so so reluctant to starting back on SSRI as it was such **** to get off them but im wondering if it treated the underlying POTS so successfully for so long it might be my best option! Its certainly not a decision im taking lightly at the moment and althou they have been perscribed i havent started taking them again. I would really appreciate anyones experience/opinins on this!! Thanks s-pot!!

Heya Lette, Thanks for response...hehe sorry to disappoint but its steph!!lol,the only other Potsie member on Irish Disautonomia!! good to see ya got on here now too Thanks for tips! Bin thinkin of tryin to get someone to get me crates of Powerade/lucozade sport from a cash n carry or something, it really does help but its costing me a fortune buying it in the shop at €3 a go all the time....how'd u manage it? Also saw u mentioned you picked up the BP monitor in Lidl...was that recently and how did you source it,? its not in any of my local Lidls n i aint got the monies to buy the ones in chemist. Using a wrist one at the mo but reckon its not that accurate! Im going to give the compression stockings a go on bad days I think. i havto say thou im into my fashion (that sounds sooo shallow but on a bad day i love puting on some nice clothes to make me feel better!!) so im rebelling slightly against the v unsexy stockings!! Althou I think if im working long hours standing on the wards in the summer (keeping fingers crossed ill get well enough to go back! ) they may come in great to help with symptoms. V Potsie day today not nice!! How r ya doin these days....any improvement?? Oh and what are you on Inderol for? Im seeing the consultant for the first time since diagnosis here in Roscommon and im hoping he will add some other medication in that may control irregular HR, severe head aches/pressure and other symptoms a bit better. Im seeing lotsa different meds pple are on but v confused about whats for what!!!

Ugh bin super happy last 10days with improvement in symptoms on increase of Midodrine to 5mg tds. More energy, less symptoms etc etc and planned on gettn v important assignment for college completed today (its bin on the long finger with all the illness and is due in v soon!) But as per usual POTS decides to rear its head bad today and make it impossible to do much . Very very frustrated!!! Im not holding out for huge improvement as day goes on or any concentration to do my work but has anyone any tips on anything i could do that might improve it a little!? Im working later n so so low in energy today ! Am upping fluid, more salt....Any other ideas? HR seems to have dipped quite alot since increase in Midodrine, its usually around 45-58 resting now with plenty of skipping and unusual rhythm patterns but have defo bin feeling better! Just wondering if 10days of this drastic decrease in HR is starting to take effect now??

Also over here in Ireland im getting 2.5mg tabs of Midodrine...dunno r they available where you are.? Usually its not recommended to split tablets, breaking the seals can interfere with absorption time and release of the drug into your system,also you cannot be guaranteed you are splitting tabs into exact 2.5mg doses when cutting them. Might not be wise, just may cause fluctuating levels of the drug in your system.

Hey Dani...im only newly diagnosed but was started on 2.5mg Midodrine..had the scalp tingling etc immediately once i started it but it subsided alot over a couple of weeks. Was increased to 5mg bout 10 days ago and had the same thing come back but only for a couple of days after I increased. Dunno am i just lucky that its a side effect that subsides for me and im not highly sensitive or its just a matter of waiting it out if you are on the 2.5mg dose and see will it subside. I have had great relief with the Midodrine at 5mg over the last 2weeks....seeing a massive difference esp in energy levels and im not 'dipping' as much throughout the day. Hope it helps ya!

Enko the first thing i thought of when reading your post was Costochondritis too! I experienced a severe bout of this just a couple of weeks before my diagnosis of POTS....v uncomfortable and it seems to come and go a bit since althou not as severe as that first bout. Lotsa anti-inflammatories if your able to tolerate them...was the only thing that helped for me! Takes plenty of time to subside if this is what you are experiencing. If you press down your chest where your ribs connect to sternum you may feel particularly painful areas, may be swollen a little to this would be a sign it is costochondritis....hope the pain subsides soon for you!

Hi Jana Cant say i know of any definate links or much about it but during weekend i hadto attend the emergency doctor with severe backpain ( I thought kidneys, but they are clear, he thought nerve/spine pain) and he recommends investigation for MS. The same evening i had, what you could call, seizure like activity. Although is was not a seizure, i experienced, and continue to do so, twitching, spasms, pins + needles, all the other symptoms you have mentioned, bad memory loss and struggle with recollecting names, events etc. I was diagnosed with POTS in April, have a serious family history of Multiple Sclerosis (including a sister aged 21 diagnosed last year with progressive form) and other Neurological conditions which seem to progress rapidly. Ill be following this recommendation up this week and be looking for MRI brain and spine to rule this out. Ill let you kno how i get on and if i get any further information of any links! Sorry nothing definate for you! s-pot

I feel your pain on this one! im not long diagnosed (April 2011) but have known for a long time that alcohol doesnt suit me...after many ruined nights out wit me being ill after only 2-3 drinks and hadto be 'brought' home! Cant count the amount of nights mates thought my drink had been spiked or id drank too much as i was being carried out....was v hard to convince them i had only 2 drinks and alcohol affected!!!! I Find its one of the harder things to cope with...i had hoped when i found out what was wrong it would be remedied and i could get on with enjoying my college years...however not so with POTS . Im not the most confident but love gettin out for a night and a dance with my b/f and friends.... usually 1 drink would loosen me up enough to have a dance and im not bothered with alcohol much after that i find it so hard going out now and not having a drink but feel so bad if i do cos the affects are usually pretty awful and last for a number of days so its just not worth it! But does anyone find that different types of alcohol suit them better than others? I have always found that if i drink brandy ( Doesnt make sense i kno as its so strong!!) I feel pretty okay when drinking it and much better the next day than if i drink cider/beer/wine etc??

Saw my GP during the week and she increased Midodrine to 5mg *3 times daily and its really helped with BP but my HR has been dipping down to 45-55 in last two days. I felt pretty okay if not better over last two days since BP increased but concerned about low HR. This evening whilst sitting in my Kitchen I took a strange turn...bear in mind i never pass out totally wit POTS, usually dip and end up vomiting etc rather than go out cold. My head felt like a pressure cooker, felt strangely woozy/lightheaded and not sure whether i was going to pass out or have a seizure. My arms and legs started twitching. I managed to get to the bedroom but laying down felt awful and for several minutes i had non simultaneous twitching in legs arms face etc and althou not unconcious was certainly not fully alert. I developed severe pain in my lower back then, which i thought mite be kidneys. I attended the local doctor, felt really ill and became concerned if this was effect of meds. My BP was GREAT! 110/70 which i expected cos i knew the Midodrine was working but as i had been moving around HR was tachy 110-120. I have no idea what happened to me. The doctor had never heard of POTS or Midodrine and was foreign so didnt understand alot of what i was trying to explain. He gave my anti inflammatories, which are helping and urine testing was clear. I have had this pain numerous times over the year as POTS has gotten worse but it remains unexplained along with pins and needles, numbness,weakness and general clumsiness. He believes I should be tested for Multiple Sclerosis. I have a sister age 22 diagnosed with it last year, an aunt, wheelchair bound with it, 2 cousins and other family members with neurological/autoimmune problems. I am just wondering is it worth going down this route and seeking MRI brain and spine scans or can all of the above symtpoms and 'funny turn' be explained by general POTS symptoms??

Thanks for response Jana. I had a holter monitor on for 3 days when in the hospital and got diagnosed. At that point my HR was doin the usual 70bpm when lying and increasing 150-160 on standing and moving around, they said i had sinus tachy ryhthm and also arrythmias based on holter monitor over that time. The low HR at 45-55 has only started in the last week since increasing Midodrine to 5mg...its not usual for me at all. The BP problem is, it seems its dipping even lower mainly when im sitting/lying for a length of time. I probably didnt explain that too well...its low all of the time i.e the best being 105/60-65 when on the go but I just start to feel awful when im sitting/lying for any length of time..it seems my bp drops lower when i stop..is this usual with POTS? I have always been inquisitive that when lying/standing bps are done on me my usual lying BP 80/50 does not dip but stays the same or increases slightly when standing....this was my question above. I have always been told that usually its normal for BP to dip slightly when one stands up and have been confused then when suffering from low BP all the time it does not do this when I stand. Is it possible to be getting delayed dips not immediately after standing? I expect im not explaining that very well as im only trying to figure out the pattern and what is going on with this...its really confusing and unfortunately im in Ireland where this is not heard of really and hard to access anyone who knows a whole lot of info, however ive been told this week that the MEDICAL consultant in the hospital that diagnosed this has a particular interest in it and is probably my best bet. I havto say thou specialist treatment for this here is many years behind the USA and knowledge is sparse but ill truck on!

Hi All I was just diagnosed about 3 weeks ago with all the usual symptoms and some not so usual of POTS and a positive TTT. I was started on Midodrine 2.5 three times a day which has been increased to 5mg this week as i felt little improvement. But im quite confused about some of the stuff going on since i got diagnosed and know now whats causing all the symptoms! Id really appreciate it if some of ye could take a look at the queries below and help me out with anything you can!! My questions are 1. Does Midodrine usually increase occurance and severity of the headaches? they seem to have gotten an awful lot worse since i started on Midodrine! 2. Hypotension is a big problem with me...however it seems at the moment when im up and moving around the low BP isnt as much of a problem but once i lie down i think its dipping. I do get regular dips during the day where i end up dizzy, nausea vomiting etc and feeling very unwell. When i was monitored in hospital my BP during the night while asleep and early in the morning dipped down to 70/40...80/50 and gradually increased as the day went on when i was more mobile. Also lying and standing BP's, my BP increases when i stand as opposed to dipping. 3. The difficulty with the above is that when im up and around, and my BP seems to be more stable my HR has been tachy, up to 150+, which is exhausting and i need to lie down and rest often as this drains my energy. 4. I presented this to my GP this week and the Midodrine was increased to the 5mg which has definately had an effect on the BP, ive had alot more energy and fewer dips over the last couple of days BUT my HR is now averaging 45-55??? Is this too low and does anyone know why/how this change in HR is occuring when BP is stabilising? Im Confused!!! Also to wreck peoples heads a little more! Before my diagnosis I had tests on my immune system which showed low T helper cells and low C4 count...has anyone experienced test results like this or know of any links with POTS? I have experienced constant recurrent infections for years, tonsils, chest, lungs and over the last year as i got sicker and sicker with undiagnosed POTS my kidneys have caused alot of trouble. Im on long term antibiotics to keep kidney infections at bay althou i suspect that the pain and symptoms ive experienced with kidneys hasnt all been infections and possibly more inflammation. Can POTS affect the Kidneys too? Sorry about all the questions! if anyone can give me advice on any of the above i would really appreciate it....its rough trying to figure all of this out!!!