jonathanireland

Hi everyone, It's been a long time since i've been on here. I am fully recovered and on no meds although I do suffer from fatigue and IBS its a small price to pay when i used to have to use a wheelchair. cant really say what healed me. Positive thinking healthy living and time was the key for me. Just thought i would let you all know how I am getting on its been alomost over a year since I last popsted :) Hope everyone is doing ok.

Hey guys! I have not been on here in a long time, hope everyone is well. So I got my diagnosis of Neurocardiogenic Syncope. My BP drops but my pulse doesnt slow down. They said I do not have POTS but they cant seem too explain the tachycardia on standing which in my opinion is a diagnosis of pots. my pulse goes from 70-80's to 130's with a small rise in bp. So to be honest I want a second opinion. I was told to go on Fludrocortisone and join the gym. Im only 11 stone. I dont understand.

OBJECTIVES This study was designed to establish a patient-controlled, ambulatory norepinephrine treatment of refractory orthostatic hypotension due to primary autonomic failure. BACKGROUND Autonomic dysfunction leads to disabling postural hypotension. Particularly in primary autonomic dysfunction, repeated syncope and immobilization can be the result. Medical treatment of orthostatic hypotension often fails in advanced cases. METHODS Ambulatory, patient-controlled norepinephrine therapy was initiated in six patients with orthostatic hypotension due to primary autonomic failure that had been refractory to conventional treatment. Before this therapy, three patients were bedridden; one was immobilized in a wheelchair. All had recurrent syncope and tolerated upright tilt-table testing for less than 15 min despite extensive medical treatment. For ambulatory treatment, a port-a-cath system was implanted and, using a CADD ambulatory infusion pump, norepinephrine was infused in individually adjusted dosages. RESULTS Norepinephrine infusion therapy enabled all patients to sit, stay and walk around for more than 45 min. One patient died after a five-year treatment period, another after nine months because of nonhemorrhagic brain stem infarctions, both in the absence of norepinephrine treatment. The remaining four patients are still mobile after a period of 19, 10, 9 and 7 months, respectively. None of them has suffered complications due to arterial hypo- or hypertension, and there has been no infection of the infusion system. CONCLUSIONS In these selected patients with refractory orthostatic hypotension due to primary autonomic dysfunction, ambulatory norepinephrine infusion therapy has proved to be a promising new therapeutic option. Further long-term studies including more patients are necessary to assess additional indications, reliability and safety of this new method.

my deepist regards dear friend, Jonathan.xx

www.epogen.com Quote***** EPOGEN® stimulates the bone marrow to make more red blood cells and lessens the need for red blood cell transfusions. Having more red blood cells raises the hemoglobin level.

Epogen does help the body create more red blood cells it does not make the volume on the cell bigger that makes no sense really. epogen does cause serious side effects more than some of the other regular drugs used and yes death in certain patients does happen all this information as been taken straight from the epogen.com website it outlines the effects of this drug and also the mechinism of action. Jodie I wish u the very best in your decision and good luck my dear. x

Hey, I would suggets that if your breathing worse, I would *slowly* wean off the med and make an appt to see your specialist as soon as. If its not working no point in taking it, But if its making your breathing worse I would wean off immediately. Do you suffer from asthma? All these cardiac effecting drugs usually supress pulomonary function on rare ocations

hey jodie, I can only share with you what I have read about epogen in the past. Epogen is a Suncutaneous Injection (injected into the fatty layer of tissue under the skin). It helps the body produce more Red Blood Cells which in turn causes Volume Expansion. So for us with POTS one would think this is the magical cure, Unfortunatly its not. Epogen pas the potencial to cause some very serious side effects, from anemia to even death. Now Im not trying to put you off this drug I am simply giving passing on my knoldge of this drug whether you are going to trial it is your own decision. there is some contraversy about this drug I think there always has been. there are definately some potsies on here who have used this drug I for one have not so I can not given you details of any experience I have had with this. Just some thing to think about, OCTREOTIDE is a potent vasoconstrictor which is given through Subcutaneous Injection as with the Epogen, But the side effects are not as dangerous as with epogen and its very good for someone who experiences pooling in the abdomen, it is known to raise blood pressure and supress a tachy pulse. I have tryed this drug and found it great, I would suggest starting it at half the min dose wich .25 micrograms the min being 0.50 micorgrams stricktly because there are some gastrointestinal side effects that do disappear after a few days to weeks. Hope you found this some help. All the best. x Jonathan,

hey I think maybe the safest way of doing this is too wean off the original B-Blocker and gradually start the new one. Hope it goes well. x

Oh! god, Im not looing for a diagnosis lol, Just an insight as to what the diagnosis may possibly be. :-)

Thats weird? I tryed this drug recently, it actually made my blood pressure too high so i stopped it. im really shocked that it gave u rebound hypotension not too sure that this is a regular complaint. I have never came across this before but it may very well be happening. Good luck. x

During my autonomic function testing last week my Blood Pressure dropped when I put my hand in the basin of ice water and I fainted. what does this mean I have a diagnosis of pots already put I suffer from high Blood pressure and fast pulse upon standing. are these two different diagnosis now I'm awaiting the results.

Hi everyone for the past 2 months I have been off all meds (apart from my once off octreotide shot)for 2 months now while prof rose anne kenny of dublin is evaluating me at her autonic funciton unit. I have not gotten any results as of yet they are really giving me the treatment i needed they are testing my autonomic system in everyway possible its great. I know my heart rate and bp rose on the tilt because the nurse said it did but no drop in bp also my fasting sugar levels came back high. they made me put my hand in a bucket of ice water when I did this my bp dropped and I fainted!. What does this mean what type of syncope is this and how is it treated? what kind of syncope dose this sound like? Please help i get results soon but wondering what ye think??????

Thanks Chaos, lets hope your right they will be receptive to it. I woke up this morning with terible GI issues so im quite unsure as to what I will do. What a shame really.

I got some octreotide while visiting family in Uk a few weeks ago. I did not need a script for this medicine in that pharmacy. I did my bp and pulse about an hour after the first dose. There was a tiny change in bp and pulse from sitting to standing position. (bp sitting 131/78 pulse 81) ---- (bp standing 134/87 pulse 89) I suffer from both low and high bp but my pressures are at a normal level how amazing is that. Now all I have to do is explain to my doctor that I bought Injections in another country without a script and took it but!!! got amazing results from it I may even take a shot and make her check my vitals. I even tryed jumping around and did bp which stayed within normal levels. I got great energey from this med but also did experience some GI issues but they died down after about an hour and a half nothing unbareable though! What do you guys think of these findings?

absolutely yeah I think the weather has a major role on the more sever tachycardia. I guess maybe the heart is trying to pump blood round the body faster to try heat us up something along those lines maybe. Thats funny I just cam across doxepin just before I cam on here and read your post thats weird hu? ;-P have to any sedative effects with this drug? the next day that is I want something that isnot gonna effect me the next day. and I suppose I dont really want something thats gonna make me depressed either ya know. I just need something low dosed that will help me relax into normal sleep at night and that will have worn off by the time I wake up so I dont find it harder in the morning to drag myself outta bed

well I am 100% Irish if that helps

Well it sure is a cold winter here in Ireland. I seem to be getting lots of Tachycardia the last 3-4 weeks I have been off all meds 2 months now and have my follow up Tilt on Monday in Dublin and then a follow up with the professor. All this Tachycardia is taking all my energy but! when I go to be at night is feels like my body is still going although im lying still in bed bodth body and mind are wide awake still going 100 miles an hour. Can anyone suggest something to help me I'm thinking along the lines of xanax a light dose before bed may help but this may also make me drowsy the next day even more tired and groggy. Please help

There is a type of rare epilepsy that causes autonomic type seizures its very rare though. Also I they diagnosed me with epilepsy before they found the true cause on the HUTT. The fact you had epilepsy tells me that maybe the Electrical bursts could have damaged the autonomic region of brain which has left you with dysautonomnia. especially the fact you have suffered status epilepticus I mean that almost always causes brain damage! I think you would certainly benefit from MRI scanning and maybe a PET scan some plasma prolactin blood levels before and after work out and also some telemitry ECG monitoring. I couldnt possible give an opinion as to what might be going on unless we had some solid medical examination ya know. sorry for the spelling and also sorry for the whole medical look on this I did 2 years nuring studies its kinda a passion of mine. ;-) I think others should comment on this topic and give opinions I can only imagine how confussed and scared you are. Im here for you though and so is everyone else.

Hey, really sorry to hear your having alot of issues at the moment. Dont worry though this lot here are sure to help you find a possibile cause there all great here. In my opinion these do not sound like seizures. I suffer from Seizures of a cardiac origin, these sound like body is deficient in something or that your body is trying to conpensate for some cardiac issues you might be having after your workout. Im not sure if you said you had the cardiac monitor on while you were working out? maybe you should ask your doctor for a stress test that maybe hold some very valuble information as to what is going on I would certainly suggest maybe some routine blood testing and then finally maybe A Head up Tilt Test. This may very well lead to some sort of a diagnosis. If you and your doctor are presistent then maybe an EEG or something along those lines to rule out neurological Seizures Disorders. Best of luck I hope I was of some help at least ;-)

docotr would not give me IV fluids at home but she gave me 10ml soidum chloride for subcutaneous injection 4-5 times a day. IS THIS REALLY VOLUME EXPANSION????? OR IS SHE HAVING A JOKE.

Thanks do much everyone for your nice comments and words of widsom I really makes me feel like im not alone. I guess Ireland has alot to learn when it comes to Autonomic Dysfunction and I hope in years to come lots will have changed and the knoldge will have advances greatly. Mirry. thanks for all ur wisdom too ur great. Thats not so bad hopefuly Il be able to get a referral in there and see him soon. Thanks guys ur so great I actuallly smilling today reading ur comments so thank u, Jonathan. xxx

I rang his sec during the week and got his email and have emailed him and have not received a reply as of yet. I hear his waiting list is massive though. I also emailed Dr. J Newton who emailed me back today and said she has experience using the drug but that it would be hard to treat me with it because of the distance. At least some gets me lol, Im just so fed up I really am Its becoming a joke now it really is whats the point In having doctors if they cant offer you the treatments which might be of benefit. Iv tryed everything else, beta blockade, flurneff, Midodrine, and SSRI's thats all doctors are willing to give in Ireland due to the lack of knoldge so basically Thats it for me I just have to struggle on for how ever long I am going to be effected with this condition

I have been trying for the last 6 months to get a doctor to treat me with octreotide both here and in the uk. So i give up im sick to death of begging doctors I dont even know to give me a chance and let me trial this drug. Im sick of the rejection! I sick of the lack of knoldge of this condition in Ireland and of its treatents! No one anywhere in this country cares. I so over it. Il just struggle on for the rest of my life with unbareable fatigue and tachycardia, and hypotension and sure I could go on for days with the list of symptoms. Thanks everyone on here who has tryed to help me and who has put up with my Octreotide Topics for all this time. So utterly fed up of the non-caring doctors in this country.