karenw

re. home injections I had one injection of octreotide whilst on the tilt table at the hospital so they could monitor my responses, and being happy with that, they let me do them at home after a brief demo by the practice nurse. p.s. I can do them much less painfully than that first one!

Hello again everybody. I am doing a 'group' reply, I hope that's OK. Gwenda. Glad your daughter is responding so well to the octreotide. I'm guessing you also see Prof M. We're v lucky to have him here in the UK, as he's such an expert on our condition.I also noted carbs were particularly bad for me. I don't know how old your daughter is, but I would also suggest she avoids alcohol. No fun I know, but it has a disastrous effect on me, really worsening the dizzines. I've had a few embarrassing moments at parties, dinners etc when I've passed out after food and a glass of wine. People who don't know me assume I've had far too much to drink! So now I'm v cautious. I stick to just one glass and then lots of water, or have a spritzer or something less alcoholic. Ramakantesh. I'm fortunate to get octreotide on the National Health Service, but I do keep the cost down by obtaining 2 doses of 25mcg from one glass vial. Initially, I was taking out one dose and throwing the remainder away, but the doctor said providing I adhered to stringent hygiene, I could safely halve the cost by taking out the 2 doses. Is this any help? Karen Sch. Hi there! Long time , no talk! Glad to see you are still keeping an eye on posts. To answer your question, I get the ephedrine on prescription and take 2 pills of 15mg before rising and 2 more before lunch. I don't take them at night as they make my heart race a bit and make me a bit 'hyper'and restless, but I do take them if I'm going out or planning something other than quietly watching TV at home. Re. octroetide dosages, I take 25mcg 3 times a day, before meals. What dose do you take? Hope things are good in sunny California! Radha. I understand your frustration. Your doctor seems incredibly cautious when you consider how many diabetics self-inject every day. Perhaps it's the actual drug, octreotide, he/she is nervous about. I gather it is still a fairly new and controversial treatment. Also, as someone said, it is expensive.It's more commonly used on Cancer patients, and I had heard that the blood pressure raising effect was discovered more by accident than by design. I have continued on my starting dosages without any ill effects after 10 months continuous use. Perhaps if he started you off on a much lower dose he could be persuaded ? I hope I've covered everyone's questions. Best Regards, Karen

As I just said on a post to Babette, I haven't been on this site for ages. I have PAF, which seems to be a 'minority' condition on Dinet, but seems to share common features with other subscribers. Anyway, I thought you people might like to hear some more upbeat news, so here goes! My condition causes me to feel very faint after food ( extremely low blood pressure) and exercise. This obviously makes day to day activities a chore, and involves careful planning to do things when I am feeling up to it. I had been getting steadily worse, and after another round of tilt tests etc etc at St Mary's Hospital in London, my consultant suggested I try octreotide injections 3 times a day before food. I was something of a needle phobe, so I had a few sessions of hypnotherapy ( sounds new age, but it worked for me!) and am now able to self administer these injections subcutaeneously 3 times a day. I also take midodrene, ephidrene and fludrocortisone. To cut a long story short, the injections have really improved my quality of life. I am able to do things I was really struggling with prior to starting on them. Every day stuff like shopping, short gentle walks, and socialising without feeling like a complete invalid all the time. I still get dizzy episodes, especially at night. (The last one resulted in a fall down the stairs and a trip to hospital) but generally, I feel so much more in control, which I think is the most impotant thing for me. I hate feeling like an ill person, when in my head I am not! I was very nervous about starting the injections. There were a few side effects to start with, but they have settled down now, and I can honestly say, the benefits outweigh these. Feeling better also gave me the confidence to join an Art and Creative media group that someone started off locally. We are a bunch of keen amateurs ranging in age from 27 to 83, and come from all walks of life, and in various stages of good/bad health.We started our meetings in a local pub and things have progressed from there. Our numbers have grown and we are now hiring a church hall to accomodate everyone, even thinking about having to have a waiting list for members as we are getting too big a group! So far we have done life drawing, acryllics, sculpture,painting in the countryside, clay work, mosaics, calligraphy and even decorative cake work. There is no end to what we are prepared to have a go at! I would never have joined before starting my new medications, as I worried about how I would feel all the time. Scared I might faint or something. I have made some great new friends, who know about my condition, and are very understanding . I have also developed a love for painting, especially in acryllics. It's a new found skill, and something I can get completely 'lost' in, sometimes to my family's disappointment, as meals are rather late appearing when I'm painting! Anyway, I hope this letter has cheered a few people up. I know that being poorly can really get you down, but it is nice to hear good news every now and again too, isn't it? Best regards to everyone, and if you haven't picked up a paint brush for 30 years ( like me) why don't you give it a go? Karen

Hello Babette, I haven't been on Dinet site for ages so it was interesting to read your post when I did. I have PAF, and can totally empathise with your symptoms. I have exactly the same thing! About 2 years ago when we were driving to Wales on holiday, I got the feeling that I couldn't breathe, it was horrible. I also think my panicking didn't help. We pulled into a service station and I lay in the back of the car. At this point my husband was ready to take me to hospital. However, I calmed down and was eventually able to breathe more easily, but the fear was still there. To continue, we went on up to Wales, and I wasn't really bothered in the same way again during the holiday. When we got back home I went to see a top ENT man on Harley Street in London (recommended by my PAF doctor). He examined my nose and throat with a camera on a tube and couldn't find anything other than a slightly 'bent' or deviated septum. He said I should just take a nasal spray which you can buy over the counter here in the UK. I bought it and have used it since, but I'm not sure it really has a great effect. Maybe a slight placebo effect.I do, however, still get the 'can't breathe easily' episodes. It's very difficult to put the feeling into words, but it's not nice at all. When it happens, I reassure myself that having been checked out, there is nothing actually physically wrong. Although, like you, I have all the same tightening and obstructed feelings. I just try and mentally take control and try and breathe calmly and smoothly. After a while, things revert to normal. It may be in the mind, but it just comes from nowhere. I have noticed that it more often occurs when I am relaxed, perhaps it is muscle related? I noticed that you also mentioned choking episodes. I also have these on a regular basis. It is quite frightening for me and my family. I am very careful when eating, and concentrate on chewing fully and careful swallowing. Despite this, things do still seem to go down the wrong way and result in prolonged choking and gasping for air. I also have frequent sore throats. I feel as if I have a 'frog in my throat' as we say here, and no amount of coughing seems to clear it. My voice gets very hoarse, and it has pretty much curtailed my part time supply teacher work, as I struggle to talk through the day. As you can imagine, teaching little ones takes a heavy toll on the voice box! I did see a speech therapist. They tested me to see if I was allergic to anything , but I wasn't. She then gave me some exercises and advice. This involved warming up the voice box by humming etc Also trying to breathe from the stomach rather than the chest to get more air passing over the voice box. She recommended frequent sipping of water throughout the day, and try to avoid coughing ( no hope!) Nothing really worked very well for me, but it might for you Sorry I can't be of more help. As you can see, I have done the rounds of all the specialists, and am still no nearer an answer. I do find the 'calming down' method works best for me, but it doesn't stop the episodes ocurring, and they are not nice. If you find out any more than me, I would be very pleased to hear from you. Best regards, Karen.

hello there, Recently I had to go into hospital as an ermergency patient due to a kidney infection. I was in a great deal of pain and couldn't pee! Not a nice experience! They had to catheterise me and put me on anti biotics. After a couple of days I was OK and allowed to go home. Interestingly, the doctor said that patients with autonomic problems (I have PAF) sometimes have urinary problems caused by not fully emptying the bladder when they go to the toilet. He thought that my infection might have been caused by this, that by not completely voiding, remaining urine made me prone to infection. Now when I have a pee, I make a conscious effort to stay on the toilet for longer and make sure my bladder is completely empty. Often, when I think I have finished, if a stay sitting for a few more moments, I find a can produce a few more drops! Sorry to put it so bluntly. Anyway, it crossed my mind that perhaps your leaking problems could be associated with something like this. Maybe if you tried my method, you might find the situation improves. It's worth a shot. Glad you coped with your exam, and you should mention your worries to the doc. That's what they are there for, and nothing much is going to surprise them. Best Regards, Karen

Hi Karen, I have the same sort of problems as you know. Recently, I have started going to a Creative Arts group. It has people of all ages and abilities, some artistic others not, some healthy, others not, aged from 28 to 80+.What is so nice about it is that we are sitting down most of the time!So far we have done a bit of pottery using air-hardening clay, this week we are doing mosaic work with a local expert and I think we are doing some printing in the next few weeks. The lady who runs it is very open minded and we can ask to do certain things which appeal to the group. Someone mentioned making Xmas cards, so I think we're planning on doing that in the near future. I must admit, I too struggled for an outlet. Doing nothing all day is pretty dull. I did have some other ideas for you though. What about joining a book group? They are very popular here in the UK, and don't demand physical exertion. I have even thought of setting one up if I can't find one. Another suggestion is a Bridge club, or something card or game related. On the subject of octreotide. I am injecting 3 times a day, 50 micrograms each time.What are your dosages? I find each shot benefits me for about 3 hours, so a bit longer than you, but it does at least make outings possible. Has your doctor said you can only have 2 shots a day?Also, have you found the octreotide is affecting your bowels in any way? Sorry to go off your original subject, but you are one of the few other people taking it, so it's nice to compare notes.I find it makes me have to go more often, and have loose bowels. But definately worth it for the huge improvement regarding standing, dizzy spells etc. All the best, the other Karen.

Hello Radha, Actually, I am giving myself 3 shots a day. All into the stomach area. I haven't run out of sites yet! Being right handed, I tend to inject more into the left hand side of my stomach, so that area gets the most 'hits'. Sometimes, I might inject just a few centimetres away from where I went 5 hours earlier. It doesn't seem to make much difference. You still sound very anxious about the whole thing and I would really like to re-assure you that, if you are able to try this drug, you might find the benefits by far outweigh any nervousness you might be feeling about the actual procedure. I can appreciate your apprehension, as I was exactly the same. Anyway, good luck and keep me posted! Karen

Hi again Radha, As you know, I have been using the octreotide injections for about a month now. I find that they help really well with standing for longer periods without feeling dizzy, and also they help greatly with eating. I found food was really a problem with me. I had to be very careful about quantity and type of food ( avoiding carbs helped a little). Also, eating a little but often.Even with the octreotide, I plan my eating around the shots. I try to do a shot as near to meal times as possible.I feel the greatest benefits in the morning, when I used to be particularly bad, dizzy, v.low BP etc. In fact I avoided eating breakfast at all because it made me feel even worse than I already felt. Now I am able to do so much more. For example, only this morning I have been baking for my husband's birthday party from about 9 a.m. till 12 noon. Something I couldn't even contemplate before the jabs.The shot I do at night is less noticably beneficial, though it still helps a lot. I think it might be because at the end of the day I am tired and like to sit for longer periods without activity. Then when I get up from the chair, I notice that horrid dizzy feeling again. I tend to do the shots in my stomach because it is accessible, though my husband has given me shots in my backside too. Anywhere with a fatty layer is suitable. I haven't tried my legs because ther doesn't really seem any need to. I just pick different places on my stomach, which doesn't seem to be a real problem. I am getting much better now at administering them too. Good luck with your doctor, and do let us know how you get on. Karen

This is an interesting discussion. Maybe if lots of people responded we may see a common pattern. I have PAF, a bit different to POTS, but lots of similarities too. I think there were one of two possible 'triggers' for my PAF, although I cannot be certain. Firstly, I went on honeymoon to Turkey and whilst there had terrible tummy problems and we had to call the doctor out. On returning home I continued for the next 7 years to have a dreadful time with my tummy. The doctors thought it was Irritable Bowel Syndrome and prescribed accordingly. We then moved house and I registered with a new doctor who organized a stool sample analysis. It turns out I had been harbouring the giardia stomach bug for 7 years! A one week course of antibiotics cured me. Secondly, I noticed the feeling of dizziness after eating, exercise and standing when I was halfway through my first pregnancy. My thoughts are that either the 7 years of hosting a parasite, or the hormonal changes associated with pregnancy might have some bearing. I'll be watching this site with interest, because the doctor I see in London, who is a world-renowned specialist in the field, admitted that he wasn't 100% sure of the cause/s either.

I did ask at the hospital if it was available as a pill or lotion, and the girl who was administering the tests did some research and couldn't find any alternative. (But she was a scientist rather than a doctor) It has to be administered subcutaneously (into fatty layer under skin, not muscle) to be absorbed properly I think. I don't really know any more than that, sorry.

It's honestly not too painful. I'm a wimp, so if I can do it, anyone can! I believe there is a long-lasting shot, Octreotide LAR, which only needs administering once a month, but that is not suitable for me, because my blood pressure is extremely low in the day time when standing, eating etc, but it goes up too high at night when I am lying down. It might be the answer for you though. Don't let the jab idea put you off from trying it though.

Hello Radha, I have a slight phobia about needles, and yet I am managing OK at home. Basically, I was taught by a nurse how to do it at the surgery. She inserted a needle into my stomach , and I pushed in the drug. Then I had a go at just putting an empty needle in. My husband was there too, and he had a go at inserting the needle. Now I know what a pin-cushion feels like! Anyway, it was nowhere as bad as I'd expected. Now I'm doing the injections at home, it has been fairly straightforward. I don't have to 'swab' a site or anything, just pick a fleshy part of my stomach (unfortunately, there are many!) and stick it in. I put an ice pack on first, which numbs the surface a bit. The only problem I have experienced regarding the jabs, is that sometimes I bruise quite easily. I haven't figured out why I am sometimes bruising and at other times I am not. I might ask the nurse about that. It sounds to me like your doctor is being a bit over-cautious, though he/she might have other concerns relating to you in particular. When you think about it, thousands of diabetics self inject quite safely every day. Why don't you ask again? Perhaps there is a particular reason why it's thought it might not be a suitable method for you which wasn't fully explained. I can only reiterate that at the moment it's working very well for me, and making a big difference to eating/mobility and general well-being. Good luck! Best regards, Karen.

I am fortunate that the National Health Service here in England is paying for my treatment, although it is not always a 'given' as General Practitioners have to stick to quite tight budgets. Luckily for me, my doctor followed the Consultant neurologist's advice and decided the improvement in my quality of life would justify the cost. He looked up the costs, and when he worked out the amount I was going to take, it wasn't quite as expensive as he had at first thought. (25 mcg x3 a day) I am presuming you live in the States. One American person I spoke to on this forum was able to obtain octreotide on her Medical insurance, but someone else was unable to do so. It's all such a lottery, it seems really unfair. Anyway, I wish you lots of luck. I know how debilitating it is when every movement is an effort - I didn't just see stars, but the whole galaxy every time I stood up! Best wishes, Karen.

Hi Joe I'm glad I'm not the only one who had the avator problem. As you can see, my little 'pixie' is the only thing I could get to work! Actually, I quite like it now, and I don't think I'll change it anyway! Karen

A while ago I posted a question to see if anyone else had tried these octreotide injections. Not many had, so I thought you might like to know how I'm getting on. Initially, I was nervous about self-injecting, but 2 sessions with a hypnotherapist and one with the nurse helped greatly. I am now injecting twice a day (3 x if I'm teaching) and I have noticed a big improvement in my day to day life. I used to be very bad in the mornings; dizziness being a really big problem. Walking anywhere involved stopping every 5 steps to catch my breath etc. Since taking the octreotide (combined with midodrene pill), which I inject into the fatty layer of my stomach, I have noticed that I am able to eat a sensible breakfast without the associated light headed feeling food used to induce, and am able to do jobs around the house such as hoovering, cooking and so on. I am also able to go to the supermarket to do a family shop straight away. Before I used to have to plan these visits to a time , usually in the afternoon, when I was feeling up to it. The injections have enabled me to go for 'normal' walks with my family, without stopping and waiting for Mum to catch her breath or stop seeing stars every few minutes. It really has improved my quality of life. I even feel 'normal' for the first time in years! Something I had forgotten about. The downside is that initially the drug did upset my stomach, but that seems to have subsided. I don't always have success with the injections, and end up with some bruising, but not often. Also, they only last about 3/4 hours.These things a small price to pay really. If anyone wants further details, I would be happy to tell them more.

Dear Sara, Thanks for your input. My problem occurs when I eat food, when too much blood goes to my stomach and it makes me feel very faint. I think my gastric motility is sluggish, so perhaps that's why I've been prescribed it. Since posting this, someone has suggested hypnotherapy to help with the needle thing. If I manage to take this medication, I will post how I get on, as it might be of interest to other people with PAF. Karen.

Thanks for your welcome Meg. Since posting this, Someone has suggested hypnotherapy, so I'm going to give that a go. Karen

Hello there! I have been under Prof M for about 6 or 7 years now. In fact, I've just come back from 3 days of tests at St Mary's Hospital in Paddington last month. I won't pretend that the tests are a whole lot of fun, but none of the ones I had actually hurt. The tilt table test is not very pleasant, but you will probably be tested by Madeleine and her assistants, who are really nice. If you want to stop, or are feeling unwell, they will halt the test straight away. In my tilt tests, I have had a variety of procedures done. On one occasion, they sampled blood periodically, as well as measuring BP and heart. Another tilt test I have had done a few times involved firstly lying there very still for quite a long, pretty boring, time. Then they tilted me upright, took BP measurements and lowered me when I had had enough. Another tilt test involved as I have just described, then lying there again, and then drinking some Complan, lying there again for about 20 minutes before being tilted upright again and more BP measurements. As I am worse after food, they were testing this on me, but your symptoms may be different. The squeeze test is when you have to squeeze a sort of 'bladder' of air reasonably hard for 3 minutes, again testing BP.Your hand gets quite tired towards the end, but it doesn't hurt. They may also put your hand in an absolutely freezing ice bag for 3 minutes, measuring BP as you go. That is pretty uncomfortable, but after you take your hand out, it only takes a few minutes to get back to normal. Good luck, and remember these tests are designed to help you in the long run. Any more questions, just ask. P.S. Sweat test is in sauna - doesn't hurt, just v.hot.

You might like to check out Prof.Mathias who runs the autonomic wing at St Mary's Hospital in Paddington, London. He also operates from the National Neurological Hospital, Queens Square also in London. If he were not suitable, I'm sure either of these places would steer you in the right direction. Good luck with your stay in our busy capital!

Hi there! I'm new to all this, but here goes. I've just joined this forum and have been really interested to read other people's accounts, as up until now, I've never met anyone else in a similar situation. It's nice to know there are others out there. I was diagnosed as having Pure Autonomic Failure about 10 years ago and at present I am taking midodrene, ephedrine and fludrocortisone. My symptoms (mainly dizziness and trouble getting my breath after both food and excercise, heat intolerance, tiredness) have been getting worse, and my consultant has now suggested taking octreotide 3 times a day in the form of self-administered subcutaeneous injections. I am something of a needle-phobe, but if it improves my quality of life, I am prepared to give it a shot (excuse the pun!) I just wondered if any else is taking this medication, and what are their thoughts?