Midodine one week in …

Ok so its been one week of taking midodrine. Its not made any difference to my blood pressure etc, but then I wasn’t expecting it to until we hit the right dosage. Ive had very little of the piloerection (hair standing on end, I just love using the medical term!).

However I have developed a rather unpleasant side effect….I’m having problems urinating. I want to go it just wont come out. I don’t want to be graphic but I am straining to the point of holding my breath to pee. It’s ok when the dose wears off as everything is back to normal. The problem is I am straining so hard my bladder is just aching.

Ive written on a few forums to see if anyone else has experienced this symptom but it looks like I’m the only one. It is a stated side effect on the patient information leaflet and the drug is used for people with some kinds of urinary incontinence as it tightens the bladder sphincter.

I just need to know if this is a symptom that’s going to wear off or am I stuck with it. If I am stuck with it I am going to have to stop taking the meds its just too painful when you urinate as often as I do.

I am scared as well that its just going to get worse as I increase my dose next week. Oh the joys of my chemically sensitive body!

Consultant visit update….

As promised (but a little late) an update on how my visit went with my consultant.

As always I had got myself into a state about seeing the consultant. I no longer trust Dr’s particularly after my experience with my ex neurologist and his team (or band of idiots as I like to refer to them now). All too often in the past one thing was said in the consulting room and something totally different was written in my notes. Culminating in the team believing I was mentally ill and making up this whole illness for attention. So understandably I get extremely stressed going anywhere near the hospital.

I was met at the clinic by the care assistant Sue who has a great memory for faces. She knows I won’t play the game so she always says “hello Mrs…… and we wont be weighing you today”. I point blank refuse to be weighed, I’m overweight, I know and they know I am and I refuse to have the information written down. I weigh myself regularly and know how bad it is! I am always polite in my refusal to be weighed. My other reason not to be weighed is there is no medical need for it. None of the drugs I am on have a dosage that needs to be applied based on my weight, if it did I would reluctantly be weighed but I would turn up for that appointment in a bathing suit to make the weigh in less painful! Plus they would only be allowed to write it down and not say it out loud so all the waiting room could hear.

The appointment was with my consultants registrar, my consultant was around and was briefing the reg on what the plan was now. So I am on a drug called midodrine which is a vasoconstrictor. It isn’t actually licensed in the UK so it can only be issued by a consultant and collected from the hospital pharmacy – which is a bit of a pain as we are around 20-30mins away from the hospital, sometimes longer depending on the traffic.

Initially at the hospital I was told to take 10mg once daily for two weeks and then go to 10mg twice daily and they would see me at the end of that week. However later that day the registrar rang me at home as they had been discussing my case and researching the medication on the Internet as I was the first patient either of them have put on midodrine. They changed the plan to 2.5mg twice a day for two weeks and then 5mg twice a day for two weeks.

I was actually really pleased they rang as by then I had already taken my first dose of 10mg when I had got back from the hospital and the side effects were weird. I had seen on other forums people had odd reactions with midodrine. I had piloerection – basically every hair on my body stood on end and I could feel every hair follicle on my scalp. I got very cold and couldn’t warm up. It wasn’t a pleasant experience, you may think that doesn’t sound too bad and to be honest it doesn’t. The only way I can describe the feeling is that its like someone is walking back and forth over your grave! You know that weird feeling you sometimes get and it makes you shiver. Well I had that for four hours constantly. My scalp was the craziest as the hair standing on end (obviously it didn’t literally, you could just feel the follicle) happened in patches and moved around my head. It was so distracting I could barely maintain a conversation!

On 2.5mg I get cold and I have a little tingling in my scalp but its nothing compared to the 10mg experience!

Ive also had the dentist this week and briefed my dentist on the fact I have EDS and Pots. She was very good and knew all about EDS but didn’t know about Pots so she asked a few questions to get her head around it. She also took x-rays of my jaw and teeth to check my bone density and said it was very good. In fact it was the best dentist visit Ive had in years. Hardly any tartar build up and no gum disease which is excellent for an EDS patient as we can be prone to gum disease.

So its been a busy week and I am pretty tired. So I am going to have a rest now! Thanks for visiting my blog xxx

MIA………again

Just a quick update to let you know how I am doing. I am now on salt tablets I take 2 3 times a day. Initially they showed a little promise in raising my blood pressure but I don’t know whats happened this week as my blood pressure has dropped again. Moving around is giving me horrible chest pains and I have very little energy. Feel quite guilty as its hubbys birthday today and I have barely been out of bed. Luckily he got a new game for his PS3 so hasn’t really noticed lol!

I am also the proud owner of a set of NHS compression stockings – Ive got these in the hope they stop my blood pooling and my blood pressure plummeting when I stand. They were a complete bugger to put on it took 15 mins and I reached a  heart rate of 140 beats per minute struggling to put them on. My stockings go from the very top of my thigh to the tips of my toes. They are reasonably comfortable and are restricting the movement of my knees which like to do their own thing! So an added bonus.

Yesterday I celebrated my 38th birthday and I had a lovely day. My friend Amanda popped over in the morning, bed and season six bones in the afternoon followed by our friend Andrew coming over for a dominoes pizza birthday tea. It was lovely as normally I don’t see anyone on my birthday due to people working and my family being over an hour away. I also received close to 100 birthday messages on facebook. I was so touched it brought me to tears.

So there you have it still not doing so great, I have the hospital on 10th November so I guess I will be back on then to update you on how it went. Thanks for hanging on in there with me.

Rach xx