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GasconAlex

I guess this counts as POTS

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I just got the results back from the tilt table test, which shows a heart rate increase from 96 to 147 in 10 minutes. However orthostatic hypotension isn't a problem at the moment as BP rose from 130/70 to 180/104.

Whilst in hospital last year they did get orthostatic hypotension (systolic of 120 falling below 70 before they stopped - but not on a tilt table)

This was the tenth neuro that I have been seen by,  with varying degrees of success. I have problems with really tense muscles (spastic) which a previous neuro started me on baclofen (currently on 70mg a day) some of the others have been less than helpful.

Some of the less than helpful neuro's have said it must be psychiatric, so having duly visited a psychiatrist for a few weeks, she said categorically organic and not psychological. Great but I also today got a report from a different psychiatrist who came out with Ganser syndrome (look it up - I'm faking and a whole lot of other uncomplimentary stuff).

All of this started after I had a tumor in my ear, this turned bad (as in surgeon (after surgery) said sorry couldn't do the operation as brain had fallen into my ear and I had a CSF leak) then getting meningitis before they could do the re operation. At this point they found out that I had a neurological deficit and can't use my left side properly. They then fixed the tumor in a 7 hour multiple teams operation and of to rehabilitation as I can't walk very well (20m with a cane) and put me in a wheelchair as even when I walk it's rather unstable. This involved 142 days as an inpatient in hospital in 2016. I also had a pretty huge number of MRIs - 8 and 5 CT scans. Luckily I am now on disability, the deafness almost covers it before any thing else is considered.

I am lucky in having a primary care doctor who thinks it isn't psychological and wants to help, along with the chronic pain centre who think that passing it off as all in the head is a cop out. In order to be vertical, because I get really bad headaches, I am on slow release tramadol. When they get really bad I have the quick tramadol, or I lie on the floor for half an hour or so. The worst aggravating thing is vibration so I don't get out much.

Because of the muscle tension I am on baclofen and have physio twice a week, the muscles are permanently tense so I have contractures and have lost two shoe sizes.

For the nausea I have primperan (metoclopramide) which I only take when I am starting to throw up.

That about sums up the potted medical history, but I didn't cover everything.

 

Any comments on if this sort of thing is usual, and if anyone has a clue on the muscle stuff that might help!

 

 

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Nothing on the muscle but I am curious, did they for sure fix the CSF leak? I remember reading somewhere that that can cause a whole host of issues and I remember thinking the issues sounded familiar. When hers was fixed she was magically cured though. 

It sounds like you have a long road ahead of you. I wish you luck. 

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Last MRI said yes, so the headache neuro said not an option, that said if I stand too long I do have a running nose. So - Yes I think this could be the reason for the headaches, but what do I know, the pots might well just be an also ran.

 

The last blood patch stopped the headache straight away for  36 hours. Unfortunately one of the unhelpful neuros now runs the local hospital neurological department (35km) I keep getting referred to the major centre (120km) but there they are all super specialist so tell me things like I don't have Parkinson's, that said it was the specialist neuro that pulled up the pots, and according to the report an overreactive sympathetic nervous system. I'm hoping that this report (which is positive with real numbers and all that) trumps the one that said it's all in my head as after more than 2  years of serious problems I am tired of all the running round in circles.

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Ganser syndrome? That is a new one. They tried Munchausens Syndrome on me. I'm sorry you are going through this. You aren't the only one, but keep fighting for answers. Your tilt table test results are real. 

Even after I got a diagnosis and had documentation, several doctors I have been referred to don't concur. 

Hang in there.

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2 hours ago, KiminOrlando said:

Ganser syndrome? That is a new one. They tried Munchausens Syndrome on me. I'm sorry you are going through this. You aren't the only one, but keep fighting for answers. Your tilt table test results are real. 

Even after I got a diagnosis and had documentation, several doctors I have been referred to don't concur. 

Hang in there.

Why would anyone want to fake being sick lol. I had a whole week where I could eat whatever I wanted and didn't need to use insulin. It felt good to ignore at least one of my medical issues. It is only a lazy doctor who says it's all in a persons head. There is always a reason for feeling unwell. I hope you find some answers soon. It takes time for some people. It is taking me a lot of time to get answers for my high BP when standing, but I got my pretty rare blood clotting disorder diagnosed rather quickly. It nearly killed me and they were trying to figure out why. But  a lot of people who have my rare disorder suffer from migraines and a whole host of other symptoms and are not taken seriously until they have their first blood clot. Most of us would love to flush our meds down the toilet and go back to a care free life. I know I would. 

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There are multiple forms of dysautonomia and their symptoms can overlap. Parts of them can go in and out of remission as well. It makes for a tough diagnosis. You've been through the ringer. I've had viral meningitis which lasted 17 horrible says; my left side is much weaker than my right but we've never associated the two. I go to PT twice a week. Many doctors have not seen enough dysautonomics to understand the many varied symptoms which can exist simultaneously. DINET's Age of Onset Survey is a treasury of symptoms and effects--it is a very useful tool. You can download it, read through and highlight everything that refers to you and bring it to your doctor; it's eye opening and documentation that you are not the only one with your symptoms and that certainly they are real and not imagined. 

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Thanks for all the replies, I am seeing the physio tomorrow so can go through this with her.  My general doctor is certain it isn't psychological and she arranged a whole load of cardiology testing (again) I did a lot of the cardio stuff last year in hospital but it didn't show much. The doctor thinks this is due to being horizontal virtually the whole time and being on beta blockers so this would mask any orthostatic affects. 

I guess part of the problem is I'm not too good with doctors, I leave things to fix themselves and then they don't - hence the problem with the ear I left until it became a continual issue and then had to have the entire inner ear removed, even if I'd gone earlier I'd probably still have lost the ear but maybe not.

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I think I would run down the CSF leak more. That article I read was about a runny nose. See if you can find a specialist. Maybe an ENT. I agree with a previous post. Your tilt table doesn't lie. But considering your history maybe your POTS can be fixed. Make sure they know about the runny nose and try to find a doctor that will listen to your concerns. Personally I had to do my own research and bring it along with the data I had from my poor man's I did at home for a month before they would stop saying it was all in my head. 

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