jonathanireland

Hey Mirry, Awh really glad to hear your bp isnt dropping anymore, fingers crossed it stays that way.

As for the feeling sick and that still being present. At the end of the day Hypotension is only one of the many symptoms of Autonomic Dysfunction so although one symptom is gone does not mean that you still wont have others that are present. I dont get many drops in bp anymore either but I still feel lightheaded on standing and so forward.

Hey Mirry, Octreotide is a Subcutaneous Injection (which means given under the skin, its painless)of a peptide which is found in the body this peptide helps other hormones to be obsorbed more easily by the body as a result the drug has a pressor effect which means it raises blood pressure and it also suppresses tachycardia and has helped many patients make a full or almost full recovery. If you need anymore information on this please do not hesitate to contact me.

;-)

Thanks SJ for ur Post. I have emailed porf mathias this morning and also rang his secretary so just waiting to see if he replys to my email and what his opinion is on the use of octreotide

Im not sure if this is much help to you, but epileptics usually get a smell before an episode its called an aura. Have you ever had an EEG or have been assed for seizures. I know ur probably thinking what is he on about but its the only condition I know of that a funny smell before loss of conciousness is associated with.

All the bes.

Jonathan x.

The specialist in Ireland was not willing to prescribe me Octreotide,

I know there are people here from UK who are being Treated with Octreotide Can you please give me some information as to who is treating patients with this drug and some contact details for that person.

I really need some help here no doctor in this country seems to care and all they ask me is why am I using a wheelchair for this condition. Im so frustrated about all this its ruining my life. I cant plan my furure and my friends and familty are sick of hearing about pots they dont even listen anymore lol I dont blame them. Please Please help me find some doctor who is willing to treat me.

Jonathan. x

I suffer from both high and low blood pressure high when I first stand up with tachycardia and then the longer im standing the more my blood pressure will start to drop followed by bradycardia my tilt was lying - 120/80 pulse 80 - just after tilt - 177/130 pulse 140 - then after 5 mins tilting - 58/38 pulse 32.

well you see doctors recommend that we drink more oral fluids in order to expand our blood volume, this route is not directly into the vascular system either, which would suggest that any fluid intake by the body is a sourse of blood volume expansion. The fuild is actually pretty well absorbed by the layer of fatty tissue under the skin, which infact is the preferred route doctors recommend for elderly patients as intravenous route is more difficult to achive in your later years.

I was looking into the whole IV Fluid thing for Pots and the reason doctors dont like to prescribe this type of treatment, Well after reading all the possible effects of infection and the extent of the canula insertion I actually dont blame them. I then came across an article on how doctors sometimes use hypodermoclysis(subqutaneous fluids ) fluids given under the skin by a much smaller needle than the one used in intervenous fluids, the very same as how an insulin pen is given. so a small butterfly needle is inserted under the skin vertually no pain involved then a drip is attached and given over what ever time your doctor recommends. This is a very safe, painless, inexpensive, way of blood volume expansion. and doctors dont usually have a problem giving paitents a prescription for this to be done at home. I think anyone that has a good doctor that is willing to help should ask for this. hypodermoclysis which means fluids given under the skin, as apose to the every day IV fluids, so think of it as subq fluids.

Please reply back with your thoughts.

Hey it sounds like you have good hope already so hold onto that and dont let it go. There are some great success stories on here and im sure your going to hear of some so keep faith in medicine that autonomic dysfunction is becoming more and more recognised every month and doctors are working hard somewhere to find new and excisting treatments to help us live normal lives or even more comfortable ones anyway. Theres always hope a story I once heard on here was about a young girl who was wheelchair bound, her parents and foctor tryed all the usual treatments beta blockade, fluid retension drugs, Midodrine ect...ect!, and then they found a drug called Octreotide, anyone who knows me here on the forum knows im fanatic about this drug and I am hoping on tuesday I will be given the chance to try this drug myself, so anyway the moral of the story goes that the young girl tryed this drug and almost instantaniusly she was 90% functioning as apose to being wheelchair bound and not being able to stand. So for anyone who has wondered thats why I hold so much hope for this drug, and other drugs out there like this who have given Pots patients back their life and now their stonger than ever. So if anything I hope you get a little insight into my hope for salvation from the cold dark world that is Autonomic Dysfunction, and never forget your never ever alone so if ever you do just come on and vent we will always listen and offer some comforting words of wisdom.

Your day will come when you find what right for you.

Hey all, I have posted a topic regarding the use of this injection before and got some great responses from everyone on the use of this controversial new drug Octreotide.

So the reason why I'm Posting again is because I have an appointment with the only Autonomic Dysfunction Specialist in Ireland on Tuesday next week. So I'm trying to arm my self with as much information on this drug so she will make me the first patient in Ireland to be treated with this drug for Autonomic Dysfuction.

I have tried loads of drugs beta blockers, florneff, Midodrine which I think I have a rash from using. and a few other treatments. And I am now using a wheelchair to relieve symptoms and at 19 thats a shame as I cannot plan my future at all. so im putting all my hope on this consultation that she prescribes a trial of this medicine.

So to anyone that has tryed this drug how are you getting on? how are your side effects?

have you any pointers for me ? anything I should Know about ? Does It help symptoms.

My Insurance does cover this drug. Thank god!.

Thanks so much for listening to me blab on again Im guess im just a teenager in distress about my future. All help appreciated xxxxx

hey guys the occupational therapist is calling out on tuesday to have me fitted for my new wheelchair, and also to see if she can give me some gadgets to help me with my daily living does anyone recommend anything that would make our lives easy from a mobility and daily living Aid point of view?????

I am under a cerdio but I have to pay outta my own pocket to see him other wise id be waiting months doing it public.

Ya I guess your right. Thanks for the info. x

Thanks guys for all your opinions and information on this.

I dont understand how a pacemaker doesnt treat tachycardia.

if the heart is beating fast one would think an electrical pulse from a Pacer would set the heart right again?? No???

Ijust need to go through all my treatment options for 2 weeks time when I see the specialist Iv waited Like 4 years t to see her. So im trying to go through every possible treatment option with her. one of those include Octreotide

Ok so I have been doing loads and loads of surfing the net on this issue and have not come across alot of info.

So I think it's about time we clear this up for everyone.

1/ Do pacemaker's have good results in treating POT's ?

2/ Do pacemaker's treat Tachycardia ?

3/ Do pacemaker's have an effect on blood pressure low/high ?

4/ Has there been any studies into pacemaker treatment and POT's ?

5/ Are there any serious side effects on pacemaker use ?

6/ Can you please share your experience of pacemaker use or any information you believe will help this topic ?

Thanks so much everyone this is something that has me so confussed.

I think sometimes saying nothing can say alot.

Dont be afraid to ask for help when it comes to pain management there are alot of great treatments out there, you need to be strong and ask for what you want from your doctor. I usually go in with an angry face when I visit mine and it works like a treat at the end of the day there here to help not to refuse us options so be forward and angry faced if needs be.

Get well soon,

Hugs!

I receive flu Jab and H1N1 every year well the H1N1 only last 2 years but it seems fine doesnt cause symptoms im sure its different for everyone but when i get flu takes longer to recover and it also means more fatigue em no please! lol so yeah im up for whatever is gonna make me feel better and less sick. hope our comments support you.// good luck.

Thanks everyone for the messages its great getting everyones opinion on all these different aspects of dysautomnia.

Iv only ever ben diagnosed with pots they have never checked for a cause or even asked about my symptoms to see what kind of pots i have just diagnosed and let home from the hospital with a beta blocker, now i use a wheelchair.

Medical Care here in Ireland is free absolutely free but! its shite (ooops i dunno if im allowed say that here)but really though it is when it comes to things they dont understand or arnt familiar with, they disregarde this and label you with a mental diagnosis here like my previous diagnosis of speudoseizures (ya right a mental seizure at 13 in fairness i was only a baby) and chornic anxiety come on yet again i was only 13 and happy as larry.

Anyways its great to have such a tight community of vertual friends forgive me if some of my spelling is wrong i type pretty fast im told and im always making mistakes but couldnt be bother fixing them all lol mwahahah jokes

thank you so much for your replys girls.

Dianna thanks so much you have really given me something to think about, and as you said there is most definately an emotional and physical benefit from working but for someone with pots I think theres an equal non- beneficial emotional and physical aspect to it lol but yeah, you really get where im coming from and you have certainly given me something to think about so thanks, so much.

I work part time (19.5 hours) a week as a care worker taking care of disabled clients about 15 miles out side town. The money is good and also I do like the work, But! I get so so tired from work the most hours i do in one day is 7 the other days i only do 2 or 3 so its not too bad but the work is so demanding physically, I end up tired for the rest of the day when i get home and i nealy always fall asleep for about 2 hours but as i said the pay is good and plus i suppose staying at home 24/7 isnt an option for me I would crack up but yet im usually to tired to even cook my self dinner some days and on days where I dont work I usually hang out in my wheelchair saving energy for work days if that makes sense. Iv been thinking about it for so long just because i get so so so tired from work that some days I could cry with the thoughts of having to do it. what are yere thoughts on this should leave should i stay? please help I would love some insight or even any ideas as to what i can do to help get by in work or whatever comes to mind as you read this thanks so much everyone yer all so great.

awh thanks patty thats really nice of you thanks for your reply,

If you could maybe let me know what he says as we dont have autonomic doctors over here my own doctor wouldnt probably give an opinion on it being related to POTS as he wouldnt know him self if it was or not,

Thanks again for ur reply

Hey everyone so today my legs are so so painful its like really bad growing pains or somthing, its pain all over but it feels like its coming from deep inside my legs i have experienced this a couple times before.

Please post your ideas on this some help would be great. lucky I have my wheelchair lol

NOOOOOOOOOOOOOOOO! WAYYYYYYYYYYYYYYY!

LOL your the first person in this country iv ever been talking to that has pots how excited am i!

I wanted to set up a support for autonomic conditions too i bet theres more people here in ireland there has to be.

Please PM me with ur msn address and we can chat more thanks a million, looking forwad to it alreay lol

So my normal doctor is out of the country, so i made an appointment to see another doctor at his practice.

She was so lovely! i asked her to prescribe me a wheelchair which she did, she even asked me was there anything else i wanted or needed just to ask. she also signed a form for me to avail of the disabled parking card. she was so nice.

you take it easy girly and kick up those legs it will do ya the best in the world. dont be worrying what caused it if it was a panic attack worrying even more now as to what caused it cant be good for you. we all get to a stage of sheer panic now and then and obviously yours was with your childrens things and having them ready n washed so just remember that its normal to panic and sometimes the body has a funny way with dealing with stress and also understand that theres nothing to worry about in future just take a deep breath sit down and just tell your self ******* THIS IS SO NOT WORTH A POTS/PANIC ATTACK******

Rest up, get well!

Aww really hope you feel better soon.

It certainly sounds like a panic attack to me hun, your pulse and BP certainly were not high enought for a pots flare up well only in my opinion that is, just because when mine flares up my pulse could shoot up to about 160 beats per minute, and u said yourself that you started to think too much during it maybe you should mention it to your doctor

Get well soon