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Thanks Arizona girl for your information, will have a read of old posts.

Ive just bought one of those kits from 23 and me that a member on here said is definately worth the investment for. Maybe that could help steer me in the right direction! In regards to the lactate i will for sure have it looked at again to see if it was indeed a fluke or if there is something else possibly going on. I would say i do suffer from terrible blood pooling as my feet can blue with in seconds of sitting on a chair, or if i put one fot in the air and one down, one looks normal the other purple in less than 2 seconds!!! I really struggle to lift my arms any higher than my head as to it just so much hard work and on my TTT my heart rate just went through the roof when i did this. Then on the other side of thing i have had the diabetes for 17 years now, i suffer from a lot of Nueropathic pain in my my legs, particularly at night time. I also suffer from Vulvadynia which to me is just an extention to the nerve pains in my legs traveling all the way up to between my legs, i dont see why it needs its own name even LOL! I have been told it more likely to be the the EDS (conective tissue disorder) that causes this not nueropathy. But maybe I should not just settle for that explination. Usually what the drs tend to say to me when i push this is "well we treat all the symptoms the same anyway." Im hoping to start a trial on Lyrica as my next one on the list soon... When you say you have immune defects with autoimmune disease attacking your connective tissues, does your condition have a name and can i ask how you manage yours? When i think back to all the bloods that were taken from me when being diagnosed with POTs, i can remember talking to my Dr who at first thought perhaps i had a type of autoimmune problem and he did request certain bloods to be taken for this. I am pressuming that is how you were diagnosed with these types of problems? I think i need to push for a SFN to rule this in or out for sure.

Im actually only on Insulin, I had all the usual autonomic testing carried out a little over a year ago, i was told my POTs was related to the EDS and that it was not neuropathy from the Diabetes. How true this is i do not know, i have a feeling it could well be both. The testing i had to rule out neuropathy was putting my hands in ice, whilst BP and heart rate were measured, and a few other tests that i forget about noow, i had a whole range of gastric emptying scan performed also as they were concerned that i had possible gastro paresis- again came back fine. I have read on here that skin biopsies should be carried out to check for small fiber neuropathy. Do you think this is something i should push for? Rich- I have heard of Singulair yes, if i was to take that from my Dr, do you think taking that along side a Mast Cell stabliser could help with all these reaction i get to drugs. I am struggling so much with daily migraines that is panics me i will never be able to tolerate a drug for them!!Then what do i do. Maybe a stupid question but again do many POTs people react badly to Singulair?

I had to go to the ER with high sugar levels and Keytones yesterday as i am type I Diabetic and i couldn't get them on track for about 24 hours, so thought it was better to be safe than sorry. Anyway the long and short of it they got me on a drip, stabilised my sugar levels, and it was brought to my attention that my acidity levels were fine but my Lactate level was high at 3.2. Now when i start reading up on this there are many explanations, Mitochondrial diseases being one that keeps coming up. The Dr said it could just be a fluke and nothing to worry about but as i have been on so many different drugs this year can this type of thing cause readings like this in the blood. I posted about Claritin not liking me last week and now I have been taking Rinitadine for 4 days and i must say i am so hot body temperature wise and clammy with flushing i do not think it is agreeing with me also. I am abnormally hot so something is not right and i am slightly wheezy tonight. Is this the MCAD flaring up because of the Rinitide in my system, could this then raise Lactate levels somehow? It just seems strange how my Lactate levels have never been a problem before. I have read that maybe try taking Nasolcrom first as a mast cell stabiliser, this could be the best step forward. Also my Dr said that Amitriptyline does contain H1 and H2 blockers already in it. Does anyone know if this is true?

There are people on here who can answer your SSRI question far better than me, but from what i have read and been told by the Dr yesterday, IF you can find one that suits you it can help BP and heart all in one....Thats the idea anyway.

Hi Katie and others That sound so awful for you, and the fact you couldn't just stop taking it when all you wanted to do at that point was flush them down the toilet....Horrible..... my heart really goes out to you on that... As everyone has said on here its a lottery as to what helps and what doesn't. Its just when you read message boards about migraine and Topamax there are some really positive stories, but then you read up about us lot and how we do on it, its a whole new story. At least Lyrica does appear to suit some people, Topamax is not sounding encouraging to me! Think its a reserve for now. My Dr gave me a really good tip today and i don't know if others have heard this all before but, he said if you are sensitive to meds try starting on almost homeopathic dosages and then take it once every 3 days, then 2, then 1 and so and so on. Just thought is was a good idea on how to introduce new substances to your system.

I used to have classic low BP on standing and after meals, over the last few months the low BP is only in the morning and this is when i just need 5mg of Midodrine. By the afternoon my adrenaline has kicked in, my BP naturally rises on standing with out the aid of Midodrine and then i fit the H-POTs characteristics!!! Im now sat here thinking a year of so many drugs that haven't worked, and now Im on just 5mg of Midodrine once a day for my pots management!! Its so frustrating. Im hopeful that i can at least try and pick out an SSRI that i just like the name of lol, maybe that will be the magic one!!! Why are the Drs so against prescribing SSRI's? I mean the bad side effects i have had from bog standard BB were so dangerous for me I cant understand why they start shaking their heads when you want to discuss a drug that if it works and practically stabilizes your Autonomic system then what the problem. All meds have risks. And another thing when ever i have mentioned that my POTs really has changed in this first year of being diagnosed, Drs seem to look at me as if this cant happen, but quite clearly it is with my BP alone!! JR- Just a quick message to you, we spoke about the fact that we both have very high resting HR few weeks ago. My cardio said today that the chances of it being an IST problem when you are already under the umbrella of POTS is very unusual and doesn't happen. I understand what he is saying, so i suppose its a positive thing that the actual mechanics of my heart are fine but the fact it runs on average at 100bpm resting still is worrying. His advice was to try Moxonidine and then maybe an SSRI.

Thank you all for your answers. Sounds like i still have options here so i will not give up just yet. I shall try some of the liquid dye free versions and see how that goes for me. In response to question above, i do get reflux and take PPI's a few times a week just to keep the acid level down before it starts to burn. Many thanks.

Ok so i believe i have possible MCAD, due to the fact that i am so allergic to meds all the time, plus with the POTS and EDS it all seems to fit the puzzle. So i thought i would start my own self medicating with H1 and H2 blockers. Did fine with the Zantec, but the Zirtek was very scarry and i did try taking a 2nd pill just to confirm to myself it was resposable for the reaction and it was very clearly. Now my question is next month i was going to go to a Mast Cell expert in the UK. But what happens if i can not take Anti histamine? Does this mean i do not have Mast cell issues? I very much doubt this becuase i can fit the profile with itchyness, wheezing and a very super sensitivity to any drugs. What do you do to treat mast cell in this case?

I have read a lot of old posts on here to do with Topamax and Lyrica and i am trying to think which one maybe best to try first. I know we all react so different to meds but not that many people seem to do great with the Topamax it seems. I have had so many reactions to drugs this year that i am trying to research the two as much as i can before i swallow any of them!! I had a very bad reaction to Sibelium, down to the fact is has a high anti histamine compound (I am allergic to antihistamine meds) Most drugs just send my heart beating out of sink and i have these very sharp stabbing pains and faintness come over me. Im wondering from the way i react if Lyrica would be a better option to start on. I believe i come under the H-Pots umberella, so going on that theory would Lyrica be safer???

I have to reply to this because i experience exaclty the same as you with out the Adrenalin, i find it very hard to push through the day, but how do you realistically maintaine this day after day, week after week etc.BB's are out for me as they do not like me one bit and Clonidine did exaclty the same to me in the sense it lowered my HR rate ever so slightly but i couldnt go to the shops when i was on it!!! Its such a difficult balance. I would like to know how many poties give up with just specifically trying to lower their heart rates, if the drugs that do this make you feel weaker.

Thank you for making that clear Lyn I have not looked into the diet for low Histamine, I will be sure to take a look at it. Thanks Nina

Can anyone tell me if taking Lanzoprazole is the same as Zantac for being an H2 blocker. I am trying the H1 H2 treatment this week for MCAD. I take 15mg of Lanzoprazole I would say probably every 2/3 days. If a PPI is ok do i have to make sure i take 15mg each day? Same question with Zantac, do people take this once a day? Is it better to take in morning or evening have people found?

Hi Kayla Im glad you are feeling positive about getting better, its important to say the least. Just to let you know how i went on the pill when i was 18, i had a really very serious reaction to Dianette and it was so scary in fact i was never prepared to try any others. I think the Drs said i was allergic to the Estrogen in it, i forget now what exactly the reason was. But thats just how i went, i dont take well to any meds it would seem!!

I have just read someone elses post and i did not want to take it over, so i have a question that i wanted to ask my Prof but did not get chance. I am struggling with a contant high resting heart rate of 100bpm or more. Even when i sleep it does not drop below this so my heart NEVER gets a break. Through exercise, fluid and Midodrine my standing heart rate is slightly controlled and does improve compared to how it use to be when i was house bound (I can do so much more now) but can still reach 150bpm on bad days. My question is could i have IST? If i do have that aswell as POTs what do i do? Beta blockers, CCB, and Ivabradine made matters worse. Why did my prof not mention that a high resting heart rate could be a slightly different problem, or is it all part of the same!!! I know my heart is not doing to pull my BP up becuase that is controlled through Midodrine. Thanks for any comments....

I was told by a dr to try Moxonidine too for the same reasons.

Hi Alicia You are right it is an anti histamine, I thought this could be ideal as it may help with any MCAD that i believe can also effect the way i keep reacting to drugs. Do you know what the reason is that AH drugs can do this? I worry that if i react like this on 2mg, what will happen at 5-10mg! I am on a tricyclic drug, have been on it for years aswell as Clonidine that was trialed for a month. Clonidine did not give me this type of scary reaction but it didnt help either. I have some Lyrica/Pregabalin in my cupboard which i have not tried yet. Maybe its worth a shot later.

Well just as i thought i had maybe got away with my new Calcium channel blocker drug, 3 days in yet again the same symptoms that i get from drugs that dont like me. I wonder if anyone can give me their opinion on what could possibly be going on. I have been taking Sebelium for my migraines, i have started on a tiny does of 2mg at night, but ideally they want me up to 10mg in the future.When ever i experience problem with drugs this is what happens and it started last night. I am laying in bed to go to sleep. I lay on my back with 3 pillow so not to put any strain on my heart. I then feel my heart beating faster, then it starts to start-stop and feel like its beating all over the place. Then i begin to get tingles in my hands and feets, and they feel like they are swelling although they are not. Next comes these very painful random stabbing pains that i get at the top and back of my head, my body, my hands and feet, just about everywhere. I then get like a wave of faintness come over me but because i am laying down i do not faint. I can promise this is not anxiety, i even lay there thinking, i just want to sleep!!! So i know i am not making this worse in my head. I am now wondering if its becuase my heart rate is always so fast, even laying in bed its approx 100bpm. Is this happening with most drugs becuase my heart beats to fast becuase i am laying still, the adrenalin has no where to go becuase i am not using my arms and legs. Is this just palpations enduced by having a new drug in my system on top of a heart that does not slow down. I even wonder if i could have IST becuase my resting HR is always 100bpm and shoots up by even turning over on bed, not standing up like the classic problem in tachy associated with Pots. Im so upset that yet again another drug thats doing this. Is it not a reaction as such becuase why does this happen when i am laying down onyl? Even with BB or Ivabardine it always started when i was laying down at night. Any help gratefully recieved...

Has anyone any tips for treating Rosacea with POTS. I am reading as much as i can into Mast Cell issues and the connection it has to many of the ailments we seem to suffer. As Rosacea is a inflammatory skin disorder, i would like to hear anybodies thoughts and advice to what could be taken to help. Would any particular Antihistamine be a good choice as well as any natural medicines to co inside to try to calm the skin and the reaction down?

Hello All I am afraid i am going to have to rant a bit here so be prepared! But i am a bit upset after doing nearly 2 months of research and coming on here and learning so much from you all, i feel this is the best place to ask. I have been with my Pots doctor for about 8 months now. I had a very disappointing consultation, I began by very politely asking if i could show him some of my hand written notes and observations on how my Pots has been going over the last couple of months. On my notes were 5 drugs i had thoroughly read up on and asked you guys about taking in with me to find out his opinion. As soon as he looked at my list of EPO,LDN,Lexapro, Paxil, Zoloft, Wellbutrin, he straight away ruled out EPO because i am "not anemic", but hang on i thought it did not matter if your were not deficient in Iron? From what i have read people who have not tolerated meds can see improve on this with volume expanding to the blood and having a dual vasoconstricting effect? I have Low BP and EDS you see!!! He then said to me one by one, what is Lexapro? what is Wellbutrin....What is LDN? I mean this man is known for treating Parkinsons desease and he didnt know what LDN was? When he realized he then went on to say..."oh well there is no scientific proof that this could help Pots patients". But surely many of the drugs we try have not been clinically approved for people with Pots anyway. Even Midodrine is not licensed for Pots in the UK and probably never will be, yet we are prepared to take it. So after knocking all my suggestions down, mostly down to the fact he didn't know what they are we moved onto my main issue which is a very fast heart rate. I have told him and told him Beta Blockers will kill me if i so much as touch them again. I tried them 6 months ago and had a terrible reaction to them and even to this day now my heart has never been quite the same. I know this because i know my own body. He pushed for me to try a more specific BB and i refused. He then offered Moxonodine at a push, but i had to stand my ground. I then made the mistake of saying "I believe i can come under both the PD AND HYPER POTS GROUPS. This explains why i CANT take beta blockers. Now this is the golden line he then said to me.... "It doesn't matter what group we put you into, we can call it whatever, we could call it the Jon Doe disease group, or the Doctor X disease group, it doesn't matter." I am know thoroughly disgusted that this doctor is not keeping up to date with new treatments and advances, it seems he is only prepared to prescribe medicines that he has conducted his own thesis and clinical trials on. Thats fine but so far 5 different meds have not helped me one bit from him. I may not be an easy case to treat, but really are any of us? I feel like i have come to the end of the road with this person, which is sad because i did respect him, but the cherry on the cake was although he dismissed my notes at the end of the consultation, once i had paid him cash there and then, he said as i got up to leave.. "Do you think i could keep these notes you have made?!" LOL he is going to just google them!!!!!!!!! I mean please!!!!!!!! I just paid to educated a so called expert, whose answers to all my suggestions were, "well the Americans are very gung ho!!!" Sorry i don't mean to insult you guys, in fact YOU ARE the future for treating pots NOT the UK.... So advice would be nice please guys.. Should i go and see a top Cardio if my heart rate is the main issue now?

I was wondering this myself as i have never had it confirmed, but as Aspirin makes me very faint and dizzy i wouldnt mind guessing i do suffer from this. Would i be able to get my local GP to do this, or do you have to go through my POTs specialist. Mine has never offered it to me which i wondering why not if his team of experts are suppose to be advanced in the UK?

I was put on this too a while ago, it speeds up your motility in your gut you see. It did make me hungry (or it aggravated my stomach not sure which one) So maybe Corina is right that taken with a stomach protecting pill it could help. Corina do you still take these protecting pills? I get a lot of acid reflux when i take daily pills.

Hi Issie My NE results came back as normal, but when they did the two blood tests they laid me down for 5 minutes and then stood me up and re took the second blood vial after one minute. Im not confident the results were correct. I have these adrenalin surges as many describe and my hands shake. My resting heart rate never drops below 100bpm either. I feel like i have to much adrenalin, but at the same time i wonder if thats what gets me through the day!! I did indeed go on Clonidine. I didnt have a bad reaction to it like a lot of drugs but it did bring my BP down and it made me feel generally weaker. But was this weak feeling becuase it did cut down the adrenalin. I think it is the same story with the CCB, suck it and see!!

I have a new concern I would like to ask if anyone on here has had trouble with or success. I have been advised to try calcium channel blockers to slow my HR and help my Migraines. I have PD form of pots i believe which is related to my EDS. I do also have a lot of traites of H type Pots. I reacted extremely badly to Beta Blockers (worst stabbing chest pain and collapsing after i had a knife like pain through my heart) and Ivabradine also gave me an allergic reaction by itching and a rash on my legs. I wonder if people could let me know how they got on with Calcium blokers, i am very sensitive to small amounts of any drugs, and because these drugs have a direct effect on your heart i am very worried. My instinct tells me they could be very simialar in effect to mess my system. I seem to be fine on Midodrine and i am on a Tricyclic drug.

If you are sensitive to meds i say go for the Botox, because there is only 3% chance of a reaction - pretty low. It most definately stopped the pain for about 5 weeks, it is slowly creeping back but the nausea and visual disturbances are most certainly going on, and the sickness and vertigo is effecting me each day still. I will most definately need to go on another daily med to quash these problems... Will keep you up dated as i am starting a new migraine drug after my next appointment in 1 and half weeks time.