Little Miss Bounce

Good luck, I hope all goes well x

Thanks for the info Galatea, I'm really pleased it was beneficial for you! I actually had a phone call earlier to say the hospital had approved my funding, and I am going into NHNN in May to learn how to inject it! ? Thanks for your help Corina & Galatea x x x

Hi Galatea, I see Dr Ingle too, and had an octreotide trial in NHNN in November 2012! I was on daycare ward in the day and put up in the hotel overnight, but the trial took place in the testing rooms in the autonomic unit. From what I can remember they had me lie in a quiet room for ages monitoring bp and pulse then gave me the octreotide injection then waited, then gave me a really sweet liquid to drink while lying down (I couldn't have the milky drink as its too much fat) and then after waiting again tilted me up all the while monitoring my bp and pulse and symptoms, they put me back down and then I went back to the hotel, then the next day at the same time they repeated the test without the octreotide injection to compare! I was told they do it in hospital because of the risk of reactions/complications, and the trial results help with the funding application. They did however forget to tell me not to eat before the test, so I had had lunch which they or I wasn't very happy about, but I had a copy of the paperwork saying no preparation required and knew the name of the person on the unit I rang a few days before just to check there was nothing special I needed to do! He did apologise on the second day for giving me wrong info but they did the test anyway I just had to try and eat exactly the same for lunch on the second day. They didn't show me how to inject or prepare the injections or anything, just asked if I wanted to see the needle, which I was fine with. I then had the results in an out patient appointment in August, and they said they would put in a funding application for it. The funding application went in in the beginning of December, only to find out in January it had been sent to the wrong health board, but eventually forwarded on to the right one! My health board sent some forms to the autonomic unit for them to fill in, but when I still hadn't heard anything a couple of weeks ago I emailed the nurses and had a reply last week saying they are currently discussing the process for providing octreotide to make it easier for patients to access it, and if I haven't heard back in 3 weeks to email again. So I'm still waiting, but hopefully if they do change things it will be a quicker process! I hope I've remembered the tests ok and in the right order, apologies if I've got something wrong, it was quite a long time ago now, and my memory isn't great! I really hope your trial goes well, there's no need to be nervous, please let us know how it goes. And I'd be really grateful if they give you any info on the new process being discussed could you let me know please? Thanks x x x PS Sorry this post is so long x

I tried DHE as a migraine treatment a few years ago, I'm not sure if its used in the same way for pots treatment though? I had it through an IV over a week in hospital, it wasn't a very pleasant drug to receive though for me, I kept having allergic reactions and it caused terrible nausea and vomiting even with the medication they gave to help. Also my IV's kept collapsing so I ended up really sore and bruised and they had real trouble inserting new ones. I had to have mine slower than most people do too but on about the fourth or fifth day I developed a tight feeling in my chest, and I noticed my pulse was quite slow for me, I asked about it at the time and asked if it was the DHE and was told it was impossible it was the DHE! Unfortunately my pulse went back to its usual speed as soon as the infusion was stopped, and it didn't improve my migraine at all! It was after this that I found on dinet that DHE could be used to treat pots, so I thought it might have been possible that the DHE slowed my heart rate! But don't let this put you off, as I think everybody reacts differently and it's probably worth a try. Interestingly Corina, looking back now the feeling with the slow heart rate during DHE infusion was very similar to what it felt like when octreotide did the same thing during my octreotide challenge, although I think the octreotide was better, it lasted longer and was a lot easier to tolerate! Thanks again for all your help and advice before my octreotide challenge, it went quite well, and I have recently put in a funding request for subcutaneous octreotide, and as its the first medication I have felt helped I have my fingers and toes crossed! I hope you are relatively well, thanks again, Siân x

That's great! x

Hi Alison, welcome to the forum! I am from the UK too, and I also see Professor Mathius' team in London. I'd ask about a referral to a specialist if I was you, waiting times in general are very long, so even if you don't feel you need it now, you may feel differently by the time you actually see them. I know there is a physician list on the PotsUK website as well as on dinet, so you can try and find a doctor with an interest in pots in your area x

Hi everybody, I'm from the UK too, South Wales in fact. I too see Professor Mathius in London, although as its through the NHS I haven't actually seen Prof Mathius for years, but am seen by his team. I have found this forum really useful as I have never met anyone else with pots and have found no help locally. Andy - I hope your catheter is working well for you x

Rachel - I have an electric wheelchair not a manual but I would definitely recommend elevating footrests and a reclining backrest, as they help my pots symptoms a lot! I also have some space next to me which I find quite helpful as when I elevate the footrests and recline the back all the way I have enough room to lay (sort of!) on my side (if stationary). I find this helps my pots and definitely helps my headache, although it's no where near as good as actually lying down flat! My wheelchair is quite big though and I do sometimes struggle to fit through places & in some disabled toilets. Corina - I'd love to know more about your experiences with octreotide, if you wouldn't mind sharing! I'm due to try octreotide in hospital next week, & would be really grateful to have some advice about dosages, side effects, what symptoms it helps with, how long it takes to work, how long any benefits last, & if there are any questions I should ask, etc. Sorry I have so many questions, I just prefer to know what to expect! Many thanks x x x

Hi all, I'm new to this forum but really glad I found it! After developing a constant really bad headache (bad enough that I had to use a wheelchair) when I was 14, I was diagnosed with a Chiari Malformation (I can't remember how big the drop is, but know it's more than my 2 sisters who have both been diagnosed). This led to me having a posterior fossa decompression in 2000 (aged 16) because of the hydrocephalus. I was then symptom free for 18 months after surgery (although most of that time was recovering from the surgery and building my fitness up after using a wheelchair for 2 years). My symptoms then returned after a whiplash injury. I then had a CSF flow study MRI which showed my cerebellar tonsils had dropped again and there was restricted flow. I was then told to decide whether I wanted to have another decompression but was told the risks were really high for revisional surgery, so the surgeon & I decided not to have the operation. A few years later I got referred to a headache specialist neurologist in London, they did another brain & spine MRI which also showed a pseudomeningocele and a collapsed syringohydromyelic cavity in my spinal cord (also called a syrinx), I think both are related to the Chiari & the decompression surgery. He also referred me for autonomic testing and I was diagnosed with POTS. My current doctor thinks a significant part of my debilitating headaches are migraine & POTS related. After trying migraine treatments which didn't work they thought it was worth investigating the chiari more so I had an ICP bolt to look at the pressure in my brain. This showed that my pressure was on the low side of normal, but that it did change very rapidly (especially when I arched my back, twisted or laid on my front-all of which are excruciatingly painful) which they thought was possibly due to EDS. As the pressure in my head was mostly normal we are now concentrating on treating the migraine part of my headache & my POTS, I have had some success with Botox treatment for my migraine but nothing miraculous & so far haven't found anything that helps my pots. X:-( Issie - I also have the same problems with having to keep my head in a neutral position and get very sore stiff neck & shoulders because of this. Diamond Cut - I've never had any problems from having contrast dye for scans in the past, but good luck! Sorry this post ended up so long!!