s-pot

I have experienced this in varying degrees over the past two months. Worst being progression to a 'seizure like' episode. I have no answers but after some investigating I figured these jerking movements etc were more to do wit v low BP whilst lying down. The worst episodes (as mentioned) occurred when I did not have my bed tilted at bottom two nights in succession (I always tilt my bed or i feel like ive run a marathon when i wake up in the AM and am far more symptomatic!!). I experienced a few arrythmias in close succession, turned over on my back and the seizure started. Im figuring its some sort of cerebral reaction to hypoxia in the brain when BP runs too low?? However Im interested in your comment re Magnesium Sallysblooms....i see alot of people recommending it. My symtpoms are getting progressively worse recently and am now experiencing alot of Joint pain and Migraines...Could a magnesium supplement help reduce these symtoms also?

Kate Im a little bit dumb with all these abbreviations so excuse my ignorance...but whats EMG NCV??

yup me too!! its rotten, some days even if i cross my legs or sit at an angle ill go numb from the cheek of my bum the whole way down. its seems to come and go in severity. But the nighttime limb deadness and pins and needles are worse....ive been known to try to move the dead arm when i wake, which with a life of its own, I usually manage to whack it off the wardrobe or locker beside me!! no feeling = no pain thou

just one more quick question! If i was successful in getting my doctor to perscribe me florinef to see if it makes any difference would I havto stop the midodrine?? Can you take both these drugs for POTS or is it one or the other generally?

Ah thanks so much Julie...sometimes just some guidance with all this stuff is enough to pick me up again. It gets wearing to keep trying to figure out whats going on!! I have found i cannot tolerate much Midodrine, usually just one in the AM cos i get severe headaches but I just know my BP gets more unstable as the day goes on. So i will ask about florinef and attempt to increase water intake more. I enquired before about salt tablets but didnt get anywher with that! And i think i will head to my GP tomoro anyway and get some bloods taken, check potassium levels. Defo will be bed tilting and lying on side for next while...dont want those seizure to get any more frequent!! Ur responses are really appreciated this evening Julie Thanks a mil!

Julie thanks so much for your responses....i just got a chance to read your comment on the other post! Yes it is very possible that this could be whats happening. I am female and the pelvic congestion suggestion is something i had not considered althou i know my symtoms get alot worse when my cycle changes. Also, I dont know about hypovolemia, i try to drink as much water as i can during the day but probably not enuf!! I work as a midwife and am v v busy during the day...i often forget to keep stopping for water breaks! plus i be peeing all day too, it can be hard get toilet breaks too!! Babies just wont wait . What can i do to aid with hypovolemia i.e keep more fluid in my body, without having to drink the gallons of water during the day? I probable manage 1.5ltr at the mo. I know for sure my BP takes big dips suddenly. After last nights seizure I kno a little bit more, it happened when i turned over flat on my back, was very tachy and bed not tilted. So I reckon the seizures havto do with sudden drops in BP, lack of oxygen in some parts of my brain leading to this seizure activity. Im just wondering what should I do with this. I defo feel a change in POTS in recent weeks, less vomity/gaggy and more fainting/dizzy/head pressure/uncontrollable twitching. Is this seizure activity common in those with POTS? Or should i head down the road now of trying to find out is the POTS secondary to some other issue? Sorry for all the questions! Ive been dealing this and searching for answersfor a long time now. I was happy to get diagnosis of pots and having a positive mental attitude has helped me get bak up on my feet. BUT its wearing me down now n I aint so optimistic anymore...im very fed up of feeling awful!!

Hi guys POTS has taken a turn for me this week and i had my second partial seizure in less than a week last night Im not sure what to do about it now. My GP hasnt got a clue about POTS so i reckon there is really no point in going to her. I have a consultants apointment in 3 weeks but the consultant is just a Medical doctor at a small hospital where im from in Ireland. He has some knowledge of POTS but is by no means specialised in anything related to autonomic nervous system. pots or anything related. He is actually a geriatric specialist...and im pretty sure at 25 i dont fall into his usual case load of patients!!! I was diagnosed by the 'poor mans' tilt table test back in march...put on midodrine and only for i spent time researching myself and providing him with information id be in the same position i was before diagnosis i reckon! I think i need further testing but i dont know what that should be. I want to be referred to a more specialised doctor but I havent got a clue what type of specialist would be the best to request. The seizures scared me, esp last night. Uncontrollable twitching and spasming down my right hand side....and last night when the seizure stopped, pins and needles started the whole way down my legs, they went dead and i lost movement for a couple of minutes. So i would really appreciate any advice ye could give me on what I should do next?? Thanks guys!

hi frugalmama well done on getting ur diagnosis...its a tough road to get one! i was diagnosed last March too. I was started on 2.5mg midodrine 3 times a day which had no impact much on symptoms. This was then increased to 5mg x3p/d...it was at this dose i started to get the severe headaches. I asked my doc to start me on lexapro (v small dose) which improved my syptoms straight away. I still take the Midodrine 2.5mg 1-2 times per day depending on symptoms. I try not to take it too much as the headaches get bad so if i can get away with taking just once a day i try to. However saying all that im quite unstable again now and POTS has taken a different turn ( seizures at night ) so my meds wil havto be changed again I think. But Ive been quite stable up until now on the above meds! Good luck with finding the right mix for you....its tough job to find what works best!

apologies all for the delay in response! aint bin online much. Thanks all for your responses....glad im not alone in the Wretching/vomiting symptoms . I havent read too much about people experiencing this but its bin one of my main symptoms....in fact it was a main symptom when i was 15, long before i was ever diagnosed with POTS and docs were sooo convinced I had an eating disorder that they put me to psych unit for assessment and the madness of not being believed about any of my symptoms and this uncontrollable wretching actually caused me to develop an ED!! POTS is defo on a change at the mo thou....just cant keep up with these ever changing symptoms :/ Jenny you gave a perfect explanation how i feel just before the gaggin starts!! my whole world slows down and i usually cant life my head off the couch to move to the loo! i reckon its just such a sudden severe dip in BP...i literally feel everything draining for my head to my feet and then the wretching starts!! Sandyshell what tests do they do to check for celiac disease?? I have noticed becoming more symptomatic after meals and am wondering if i should give a gluten free diet a go.....ive no experience of trying a diet like that at all so i wouldnt have a clue where to start!!

Ive recently bin feeling POTS changing symptom wise :/ OH was my worst problem before. In last couple of weeks Im experiencing alot more arrythmias and feel closer to fainting. My previous most common symptoms were sudden BP drops and severe wretching and fatigue, ive never experienced full syncope with POTS. However the other night when i was dropping of too sleep I was awoken by the usual feeling of my heart doing a somersault in my chest...more severe and prolonged than usual. This was followed by (im guessing) at least 5mins of uncontrollable body and facial seizure like twitching. I believe i was having a partial seizure. Althou fully concious and aware of surroundings and noise I was unable to open my eyes, had pressure in my head and just felt very strange. I then felt it pass all of a sudden and was able to settle again. The twitching is coming and going at times still but not like it was that night Im reading online about Reflex Anoxic Seizure and am wondering if this could have been due to a sudden lack of blood flow and oxygen to my brain? I usually sleep with my bed tilted as it seems to improve my condition but for those couple of nights i was away and unable to do this. Just wondering if anyone has experienced this or has any information about POTS and these Reflex Anoxic Seizures im reading about? Would greatly appreciate it if anyone could shed some light. Im a little concerned now about my change in symptoms as i am working in a hospital environment and prefer to be well prepared if POTS is going to take an unexpected turn!! Thanks all for reading S-pot

I'm taking Lexapro, its been really helpful in reducing symptoms. But like dani said you have to put up with some yuckiness for the first couple of weeks before you see the benefits ( I believe with most anti depressants this is the case). I was on Cymbalta for a long time, it was a nightmare to get off. In general I'm finding Lexapro alot easier on the system but everyone is different esp when it comes to POTS! I think its worth putting up with some side effects while the system gets used to them cause they can be quite an effective treatment....defo was for me anyway! Im on a tiny dose...the lowest dosage here (ireland) is 5mg but thats even too much for me...i cut the tablet and take 2.5mg at 7am and 7pm. Good luck with them if you decide to go ahead!

I am just wondering what other peoples physical responses are to the sudden drop in BP that happens with OH. I am one of those that has never fainted really. BP seems to drop about 10-15min after standing and my response has always been vomiting/severe wretching, a feeling like 'everythings draining from my head, and extreme rapid fatique. Currently i find the symptoms of the Hypotension alot more difficult to manage than tachycardia/arrythmias that comes wit POTS. Ive noticed an increase again in the last week in the vomiting/wretching/BP dips. However I feel like im getting closer to fainting with it now. Has anyone else experienced a change in their physical responses to BP dips? Im concerned that, even thou fainting has never been a problem before for me, this could be changing!

i lost nearly 28lbs in the run up to my diagnosis...over about 11months. Symptoms were so bad and POTS uncontrolled that everytime I tried to eat a normal size meal i became v symptomatic. When my BP drops I start wretching severely. Never faint thou and hanging over the toilet bowl seems to do a great job of gettin my BP bak up!! Now my symptoms are better controlled with medication this doesnt happen as often but defo if I eat a large carb meal...pasta, rice potatoes. Or just large portions in general, i have noticed i become more symptomatic. Never thought of it like ye have discussed above i.e energy usage digesting a large meal and blood pooling. Makes alot of sense. Ill havto give the grazing a go and see will it help with symtoms!

Hi All thanks for your responses Lotusflower.....I used to take Valerian all the time but since POTS diagnosis ive bin reluctant to use it cos was not sure of the effect. So thanks for that....ill give it a go again! I find it fantastic for sleep. I did switch around my meds and completed 3 nights. I really feel the worse for it....sleeping during the day was an awful struggle!! Hope ill get into a routine with it as I do more of em. POTS wise...it wasnt really too bad! During the night my HR seemed to get very Tachy....at one point my HR was running at 140....a **** of alot faster than the woman I was looking after in the throes of end stage Labour!! lol I think between the tachycardia and lack of sleep my body feels like ive done rounds in a boxing ring, its worn me out! but nothing a few days of rest wont remedy! Thanks all for the Advice Spot

Hi all. I am a student midwife and after being diagnosed last March I started meds for POTS. Im currently taking Lexapro 2.5 morning and evening 7am/7pm and Midodrine 2.5 at 7am and sometimes again in the afternoon depending on symptoms. The Midodrine gives me severe headaches so I try not to take it too often. I am still symptomatic on the above meds but alot better than I had been and managed to get bak to college and work on wards in July. My problem now is I have been requested to do night shifts this week ( I was hoping to manage to delay this until Jan when I get to see my consultant re meds and how to manage them! but not possible to delay now!) I dont know how I am going to manage my meds and POTS all thru the night too!! Currently I take the bulk load of them during the day to keep me going, the constant walking etc of hospital work seems to keep my BP fairly stable too. However at night I must tilt my bed at bottom and often struggle during the night with symptoms. I am thinking ill just change my meds to take the bulk load in the evening i.e Midodrine and Lexapro. And my 2nd dose of Lexapro in the morning when I come off shift. I am just concerned that when I am trying to sleep during the day after a shift, POTS symptoms will be worse (its not easy to get the usual nights sleep during the day even if i am exhausted!)and I cant take Midodrine if I am trying to sleep! Id really appreciate any advice and If anyone knows the effect sleeping tablets or herbal remedies like Valerian can have on POTS? This might be an option to get a restful sleep during the day if it does not kick of POTS symptoms ;/

In the year since my full blown POTS symptoms arose I dropped 1.5stone, my weight always fluctuated before but now I find that if i have a few busy days when I don't eat as regularly or as well as usual I drop weight pretty quickly. I had some weight to lose before it all began, dropped from 9.5 to 8stone but its more of a struggle to keep it on these days and dropping below this makes me look ill! Never thought id see a day where i would be filling up on the junk to keep weight on!! Its defo something to do with POTS, im thinking possibly my body is burning more energy to keep BP and HR stabilised all the time than before??

It seems to help me at times, but too much can cause problems for me also. When I feel that v draining, dip...like 'everything is sinking to my toes' sorta feelin! a cup of coffey/tea really helps...obviously this is the vasoconstrictor effect of the caffeine when my BP is dipping...but if im tachy it just makes it worse. I have learned to recognise when I need it and when I don't now...but really I couldnt do without my cups of tea/coffee anyway!

I came off Cymbalta 30mg last year...I was put on SSRI's in 2002 when i was 15, When i look bak now i know i had POTS symptoms at the time. Drs cudnt find anything obvious wrong (POTS is not usually recognised in Ireland now never mind then!) they said i was depressed, psychosymatic and had an anxiety problem and put me on SSRI...surprise surprise my symptoms gradually decreased I began to feel beter and for them this confirmed their psychiatric diagnosis and left me totally confused!. Any time since then i tried to come off them I had horrible side effects, dizziness, nausea, vomiting and at one stage severe tonic clonic seizures...i will prob never kno if the seizures were down to withdrawal from drugs or the fact the SSRI seems to treat the dysautonomia so well and removal of the drugs at that time caused a severe autonomic response. I was only officially diagnosed with POTS/OT/dysautonomia April 2011, exactly a year earlier I had gone thru the horrible side effects of coming off the SSRI again, i knew for sure i no longer needed them and certainly didnt believe the psychiatric diagnosis i had gotten at 15 anymore! I got sicker and sicker as the year went on...POTS was eventually diagnosed by TTT. Midodrine helped a little along with salt, fluid etc but no where near enuf to get my life bak on track. I (grudgingly) started Lexapro 2.5mg in morning and evening about 4wks ago (tiny dose!). Overnight my POTS symptoms eased. I have not wretched since the day i started (this was a daily occurance) and my energy levels have gone thru the roof. So much so that i have been accepted to return to college and work as a student midwife again I dread the thought of ever having to come off an SSRI again, and althou i hate being on them it seems its the only thing that treats my POTS well enough to have some normal life. The withdrawal effects are horrible...takes AGES to get off them and I believe for whatever good they do me now i will have long term effects of being on them from such a young age! But im gettin my life bak again and I am grateful that something has worked again!

Thanks so much for that advice Dani! The 2.5mg is having great effects, still no POTS Symptoms!! But as I'm only on day 14 therefore have miserable side effects and no appetite...woke this morning feeling slightly better and managed a decent brekkie so after reading your posts today I'm very positive if I hold out everything will improve for me But they do wear off by evening so your advice re: gettin up to the 5mg I may try soon. The only problem is, if I'm lucky enough, college is going to let me go back in 2 weeks. I'm a Student Midwife and this involves 12hr shift work going thru all these side effects again in a couple of weeks will br a nightmare if I'm working!! Have you found anything that helps ease them at all? Like I said I've totally lost my appetite, some diarrhea, woozy stoned-like feeling during the day when they peak and tiredness (although not the same as the awful POTS fatigue I was having). Also how long did you wait for initial dosage to stabilise before you increased dosage again? Thanks a mil again, the posts on here really helped in last day or two keeping me positive with this! Delighted with impact of Lexapro and that I might get back to college but I started getting so nervous when I began to feel unwell again! It's nice to know it's the usual and there is light at the end of this particular tunnel!

Heya MIRACLE DRUG for sure! I started it nearly two weeks ago...had big BP drops several times a day that had me running to the bathroom vomiting, dizzy etc...v draining . I Had to defer final year of college till next year cos of POTS. Started lexapro and overnight for the first time in a year vomiting and all other POTS symptoms disappeared! Im So HAPPY! Went into college last week and they are happy to let me back...feel like im gettin my life back..if only I had gone on Lexapro sooner! But I have the same issue as you Dani which im concerned about...Im only taking 2.5mg at 9am (was perscribed 5mg but its much too strong) Im having side effects from drug during day but overall am much better and am hopeful if i wait it out for another couple of weeks these symptoms will disappear. The drug seems to wear off by 9/10pm thou nd i start to feel rubbish again...got up during night last night and for the first time since i started drug i began Wretching again, obviously it had worn off n BP dropped when i got up. I'm thinking might it be wise to take the other half of tab 2.5mg at 9pm in the evening?? I'm not sure though is that wise with these drugs as I know they are slow release and it might be too much? Any advice much appreciated!

Glad to hear that response is normal enough for POTS! Thanks for responses So do you guys suggest persisting with these meds and it can get better?? Im terrified after that reaction and kinda ruled it out straight away! Only problem is the lowest dose of Cymbalta i can get here is 30mg so that hasto be my start of dose Tankful glad to hear your symptoms on Paxil are improving....thinking maybe i should try a different drug to Cymbalta. What exact group is Lexapro and Paxil? SSRI/SSNRI?

Hi Anna, Id be interested in finding out if you get any links on this! I havent got any info to give but my POTS was diagnosed in March, however in my journey to get diagnosed I visited an Immunologist and had a full immunology screening (still awaiting some results) I have a dysfuctioning immune system and always have, prior to any POTS symptoms. Tests showed low T-helper and C4 cells however i continue my journey to see is some Immunodeficieny/Autoimmune problem my core illness setting off POTS> I have a massive family history of Autoimmune problems...sister 21 diagnosed Multiple Sclerosis (progressive) last year, an aunt wheelchair bound with MS, grandmother died with rapid deterioration of Motor Neuron disease (6months after diagnosis), pernicious anaemia among other diseases. I am still early on in trying to find out exactly what is going on in my body! However I do suspect my family genetic line involves some defected gene causing autoimmune problems and suspect this is the core of my problem! Just to find out now exactly what that is is the toughie! ill be keeping an eye on this link to see if anyone comes up with anything...sorry cant be of more help! s-pot

Thanks all for your posts above and advice. As i tolerated Cymbalta for several years I tried this drug this week having been off it for a year. I was very hopeful it would give me a boost with symptoms energy etc in addition to the Midodrine but it was..... A DISASTER! Took the lowest dose 30mg for one night. I had a horrific night, extremely agitated,jittery, panicky, anxious (i have had none of these problems before taking it!) and a feeling like i wanted to 'get out of my skin' if that makes any sense. It seemed to have sent my nervous system into overdrive, it took 24 hours for the effect to wear off and i was like someone who was on fastforward for the day!! Really horrible and im defo not going to take them longterm when my system reacted so strongly so quickly.....So back to good old Midodrine on its own, lotsa salt and water, n a script for positivity n hope things improve!!

I just recently joined up and for couple of days couldnt understand why my registration hadnt been completed until i read instructions properly! I hadto email my details, diagnosis etc to forum moderator in order to complete the registration, up until that point i was listed as Validating too. Id say these members did the same, never emailed and didnt complete the process!

In my case I came off the SSRI 1 year ago but did not have a diagnosis of POTS, i have gotten gradually sicker and sicker since i came of it the SSRI and then POTS was diagnosed. In hindsight it is thought that everytime over the years i tried to get off it and became ill it was actually POTS rearing its head! Hence why I think going back on it now may be the best thing for me, it treated my symptoms very well for a long time unbeknownst to me. I dont recall any problems sleeping when on them but had alot of different symptoms in the final year on Cymbalta. I will only know when i go back on it if this is down to the drug itself or just worsening POTS.