sj75

i get similar episodes. For me they are more common after ovulation and until a few days in to my cycle. They are also triggered by certasin foods and temperature changes. Beta blockers have definitely helped and i am about to go onto the pop pill to see if that helps with the hormone side of things.x

sorry lots of questions....... well i nearly collapsed again this morning so hubby has rung the drs and we are waiting for the nurse to get back to us. I am hoping they can do blood tests to check my immunity rather than just going ahead with the injections (which they had previously wanted to do). If i have to have the injections im going to ask to be preloaded with the above list of meds. Ive been reading about mast cell issues and have a surprising amount of symptoms of this so am thinking about getting tested. Can anyone tell me more about which sort of speacialist i should be referred to and what sort of tests i should request?? do mast cell issues affect the way your body reacts to immunisations? interestingly another thread on here has got me thinking about connective tissue issues. Can anyone give me more info on this and the sorts of effects it has on the body and possible symptoms?? Also, could anything other than anxiety have made my bp shoot up so high? as i know with allergies the bp goes down. Is it me or does having pots seem to open a whole other can of worms???

i meant to ask if the ranitadine was to protect the stomach from the prednisalone or does the ranitadine help with anaphylaxis??

Hi Julie, Thankyou for that, im going to discuss this with someone this week. I made the huge mistake of going to a pharmacy and speaking to a pharmacist about it yesteday. How frightening is it to have a supposed medication'expert' know so little!! she told me nothing stops anaphylaxis and it immediately attacks the heart and stops it??? and that i should just take one over counter antihistamine but it wouldnt do anything anyway. Then she started talking about the rabies vaccine which she thought was given intravenously!!! Ive decided im going to try and speak to some kind of allergy expert and to someone who knows more about my rabies risk as i collapsed yesterday (doesnt normally happen with me and im fairly well controlled pots wise). The jabs are making me so so ill and im getting numb limbs and all sorts. Im wondering wether now i have had 3 plus immunoglobulins if they can just do blood tests to monitor my immunity level rather than just keep jabbing me??

thanks guys. Unfortunately i have 2 more jabs to have but more spaced out than the last ones. I did take a clarityn 2 hours before but wonder if i can add in another antihistamine or if there is a better one?? Im in 2 minds about the anti anxiety meds as although that bp was hideous, i was thinking maybe the adrenaline it caused may help reduce any problems with allergy??

Hi guys, Im really hoping you guys can help me with this. Im currently undergoing post exposure rabies vaccines after contact with a bat (precautionary). Ive had the immunioglobulin injections and have had 3 of the 5 vaccines. The first vaccine i was fine, had a momentary 'odd' feeling with a wierd sensation in my lower stomach, throat and heavy legs just after the injection and flu type symptoms the next day. 3 days later i had the second jab, again a momentary 'odd' lightheaded feeling (with heavy legs again). Within a few hours i had the chills and flu symptoms again and my skin felt like it was really hot (but only to me as it wasnt red or hot from the outside) i then developed just about every symptom on the list of known symptoms which subsided over 3/4 days just in time for my third jab yesterday. Admittedly i have been quite anxious over the whole thing and have been particularly anxious about reacting to the jabs so have been taking loratidine 2 hours before hand. Within minutes of yestedays jab i had a horrid hot feeling in the back of my throat/nose and a funny smell, then felt like i was going to pass out. I was assisted onto the bed and had my bp checked, it was an astounding 169/143!!!!! after a few minutes i felt a bit better and went to sit in the waiting room for the obligatory half hour only to start feeliing odd again. My legs felt really odd and heavy and hubby who was with me said i looked really pale, they took me into another room so i could lie down where i stayed for a good half hour. I was very pale and lightheaded and had a whole body tremor. My bp came down quickly and i was told it was probably anxiety and i should go home to rest. By the time i had walked the 5 minutes home my bp had shot up again and for a good 4 hours i had to lie down as upright was not an option. Since then my bp has been up and down like mad and this morning its lower then ive seen it for a long time (im hyper so dont tend to get the low bp many potsies do)but i feel ok (no flu symptoms). Although i was anxious im not entirely convinced that my symptoms were down to just this alhough it would probably be my preferred option?? has anyone had anything similar? and can anyone explain the strange internal smell i had and such high bp? ive got a week before my next jab and there is no getting out of it. Im petrified as each time the symptoms at the time of the jab have got worse and yesterday was pretty hideous for me. People on here often talk about mast cell problems and i know these are linked to reactions and sensitivities, can anyone give me anymore details??

me to.x

i think it needs to be ascertained exactly what it is about the hep b vaccine that is causing the problem as the 2 jabs might be completely different. (hep b and c are completely different viruses). The good thing is that as the virus isnt affecting your liver you have time to gather all the available information and research before going ahead and i think that puts you in a good position. It also sounds like you have a really supportive specialist which counts for so much as hopefully you will be able to trust his opinions regarding the jab when the time comes. Many vaccines have been known to cause systemic autoimmune responses (albeit rarely)and it comes back to wether there could be some autoimmune aspects to pots??

how many bags of iv fluids do pots patients usually have? each bag of fluid is a litre which directly into a vein isnt a problem but subcutaneously would have to be given over such a long amount of time that i would imagine it would be very restricting and involve a lot of equiptment as iv fluids can work with gravity but subcutaneous delivery would need some kind of driver i would think? From caring for patients with subcutaneous medication delivery i can say its not without pain or risk of infection. I do also wonder wether the extremely slow absorption of fluids this way means its not suitable in pots or would require continual infusion which would mean loss of mobility and quality of life? not sure just my thought but i woukld be interested to see where this heads.x

Im so sorry you are having so many hurdles, it seems like we are constantly havig to fight the system. What interests me is that ive often commented on the number of medical personnel with pots. Here in the uk the hep b jab isnt routinely given unless you are travelling somewhere with a risk or if you are going into healthcare. I recieved my initial 3 when i started nurse training and have had boosters since then. It does make you wonder??

its the same in the uk, before my first pots episode i had worked solidly so had paid enough contribution but now if i try and work and dont succeed or have a flare up i will have lost my benefit and probably not be able to get it back. Rock and a hard place.x

I would love to work on my good days but the most difficult thing for me is that things change from hour to hour and i never know until the day that that day is good (if that makes sense-lol).Wish there was something i could do from home. I worked in telephone triage for 3 years and would love to be able to do that from home but dont think its a possibility.x

im surprised how many medical professionals seem to end up with pots. Makes me wonder if we are all exposed to something that triggers it?

im a nurse but also couldnt get a dr to write a 'well note' so was made redundant on the grounds of ill health. I would love to be able to work from home especially if i could still use some of my medical knowledge but the opportunities just dont seem to be there?

yes!! drives me mad i look like a beacon!

im the same and its a complete nightmare as people sometimes think its anti social to not have a drink when they are. All i can think is that its a diuretic and so dehydrates the body and it also dilates blood vessels?

if you suffer with bradycardia then there is no reason to rid of the bodies natural pacemaker,pacemakers do a great job at speeding up the heart but cant slow it down as it cant stop the heart beating too fast. For me it would have been used because i have tachyarrhythmias that they cant control so the procedure for that is called an ablate and pace and yes they do irreversibly sever between the ?SA and the Av node- scary. Its what put me off trying that route. x

Just to add that the side effects can decrease over time with continued use. I take bisoprolol but was on Atenalol before that, i had no side effects with Atenalol, but my cardiologist wanted me to move across to Bisoprolol which in the early days i got a lot of problems with but none (fingers crossed)now. I was wrongly advised to stop the atenalol without tapering the dose- i would NEVER recommend it, i ended up in the back of an ambulance 4 days later as a result of rebound, very unpleasant!!

the problem with pots is that the tachycardia is just a symptom of other things going in within the body,you need to look at the root cause. All pacemakers do is fire off an electrical stimulus to trigger a heart beat, if your heart is already beating fast there is no need for it to fire off more. I wonder if you are thinking of an icd device?? but they also wouldnt be any use in pots either unless the tachycardia was combined with some sort of arrhythmia? Are you currently under a cardiologist?x

i was offered a pacemaker but for arrhythmias not for pots, as has been said previously pacemakers are only useful in bradycardia (they cant slow down a fast heart beat)you would therefore have to have the bodies natural pacemaker severed. This is irreversible and means that you would have to be reliant on a pacemaker for life. A pacemaker wont remove the symptoms you have due to pots, it only tackles the heart rate and there is an argument that this could cause more problems in pots as the elevated heart rate is a natural reaction to help the body restore balence. If a young person has a pacemaker, they will need surgery for lead and battery changes. The battery change isnt too much of an issue but i was advised that lead surgery can end up being open heart surgery if the leads have embedded themselves in the tissues. It really isnt an easy option and the last i heard there was no proof of its effectiveness for treating pots.x

Chronic pain really drags you down, its took me 3 years to get my under some sort of control. I really hope you manage to get something sorted soon.xxx

ive read a few posts about this protocol now, can anyone tell me more about what it is and how it work? i dont think its something that is available in the uk but i would still be interested to learn more about the principles behind it.x

My understanding is that all beta blockers have a rebound effect which is why you arent supposed to stop them suddenly. They build up in the system in order to reach their optimim levels. They suppress the release of? adrenaline and when stopped suddenly you get larger surges of it hence an increase in bp and hr.x

cat-lady, my ablation was feb 06, within a month i had my first pots symptoms and was diagnosed last july (so like you 3 years later).

i can see why it has been suggested as it slows heart conduction without affecting bp, but ive always understood it as not a drug to be on until most other options have been explored (i could be wrong).x