louloutinks

My worse times are a 2-4 hours after waking and also later in the evening. Those times are when my pots symptoms are worse.

Hi michelle, i have no one checking my bloods - I am in the uk - but was told i will be contacted after a month to see how. Each tablet is 100 micrograms and i take half three times a day. Is that a lot then? I have been getting very low pulse pressures and my BP this morning was 82/81 and have felt pretty ill all day and feels like my heart is missing beats. I still see no benefits from this drug but have been more symptomatic on it . I have given up taking all the vitamins lol but shall have to wait and see what the hospital say in the phone call next week.

Can you not get meds from where you were diagnosed Andy?

ps I was told my high BP's were a shock response upon standing. Not too sure about that though as the shock response happens almost straight away whereas my BP can go high after 10 mins of standing.

I have been to the autonomic unit. I was first seen by Prof G in 2010 and he referred me to them for the TTT. In March 2012 I was seen by one of Prof M's assosiates (Dr Talk Very Fast!), and then recieved the TTT in October 2012. I finally got my results at the end of May this year. I was not seen by Prof M throughout at all. It is a very long process but you can put your name down for a cancellation slot They are lovely at Queens Square. Good luck

Hi all. I was started on 0.5 per night for 2 days then 0.5 3 times a day thereafter so on 1.5mcgs now. My pulse pressures are narrow to but my diastolic seems to be going higher. This morning my bp was 110/104 with fast heart rate. I seem to be more symptomatic all day rather than mornings/evenings. Its like I am having a potsy flare. I am still having silly high heart rates up to 170 or so. I feel more breathless too - everything is such an effort I spoke to my gp about the numbness, and he said it causes mineral deficiencies and that was all, so I bought myself a pottasium supplement but as I have swallowing problems because of the chiari I cannot swallow them as they are SO big lol - waste of money there then!! The florinef is not helping with my morning pre-syncope at all - in fact I feel worse. I even had to sit down to prepare my sons packed lunch this morning. I just hope they start working soon and this is my body adjusting?? Bren...little man is cool - he has a day out at the pleasure rides park today - he is a thrill seeker! How have you been keeping yourself Bren - I dont often come on here any more x

I have been taking florinef for just under two weeks now. If anything I have felt more symptomatic on it. I have excruciating headaches (I also have chiari and its made headaches worse). I have nausea, numbness in calves and feet. My BP keeps spiking high. My heart feels like it is pounding harder throughout the day. My heart rate is still going sky high upon standing. I am more symptomatic all day rather than just the mornings and evenings as I was before taking florinef (apart from when I was having bad pots episodes that lasted all day). I am still get very narrow pulse pressures. How is florinef supposed to make me feel - what 'should' the benefits of taking it be, as so far I see no benefits?

Hi all. I finally got my results of 60 degree tilt and have pits and vasodepressor variant syncope. I was very surprised at the low responses of my heart rate on the TTT and it only went up to 126. There was no orthostatic intolerance which I was also surprised at because at home I either get very high or very low readings. They did note BP of 131/87 on standing after 3 mins which they said could be an alarm response but this also happens regularly at home and the readings are often higher than that. My BP dropped to 51/31 just as I felt faint which was a few minutes after they did venupuncture. The valsalva BP profile was normal , HR resting 71, phase2 105, phase4 67bpm ......surely how can i have pots esp when the catecholamines which were taken as soon as I got off the TTT were normal. Noradrenaline sup 228, stand 317. Adrenaline sup 27, stand 41. There was not much of a change (approx 10mg>) during cutaneous cold, hyperventilation etc tests. The 24 BP monitor showed higher HR's which are more like what usually happens with me on a day to day basis. Tachycardia in am on standing 135 and 173 after stairs. 159 after getting in car etc. BP was 79/46 whilst asleep. I have been given florinef 0.15 daily but they would not give me beta blockers to lower my heart rate even though they know how high it goes. I have chiari malformation and for the 5 days I have had flirinef my head is killing me . Why does the TTT give different readings to real life situations. I have so many high bps on standing but they said its an alarm response even after standing for 9 mins so that does not make sense either. Anyone that can enlighten me would be great x

Monstrosity, I have joined the support group from the link you provided so thanks for that. The neurosurgeon is at the main Neurological hospital in London so I am quite confident he will put me in good hands (if it comes to it of course!). Kart bug have you had ABR and acoustic reflex test etc. so far I have only had tympani test, hearing test, rhinne and the other tuning fork test and tone test. One ear better than the other, no response in right ear with tuning fork and normal pressure in both. I will be having the ABR, nystagmus test and reflex decay etc. I want an answer so maybe they can stop this noise and discomfort for me. I thought I had hyperaccusis but its a problem with the cross reflex. Be interesting to find out how you get on.

Sorry Katybug but for some reason your post didn't show on the iphone. Yes I can feel the thumping both in my ear and under the skull base as movement. Have you been seen by an audiological scientist? They check your acoustic reflexes and brain responses amongst other things. Is it your contralateral or ipsilateral response? If you put in headphones you can check by removing the ear pieces one by one and see when the thumping stops in response to noise - that's how they know that it is my contralateral acoustic reflex that is awry. I can set mine off very easy by doing that but I get thumping every day and it drives me batty. From the moment my alarm goes off, the noise sets it off. Then my son speaks and it starts again. If my ear doesn't thump, my face twitches to the noise instead - very wierd but they said that the sound response goes round in a figure of 8, trough your ear, to the brainstem, out through the opposite facial nerve then on to the stapedius. Makes sense to me by what I get. The good thing is is that they have found the stenosis and that you are under a neurosurgeon.

Thanks for the links monstrosity. I will check them out. I don't have much faith in my neuro as he didn't even see it and said it is only 5mm so mild and needs nothing further. He even said only take pain meds for excruciating head pain twice a week max (like to see him suffer this). I have contacted the London neurological hospital where I saw a neurosurgeon and left a message with his secretary. I have read I should be checked for both a syrinx and cranio cervical instabilty due to my eds. the instabilty would make sense as I get orthostatic headaches. So when I stand. The cerebellum drops further,blocking off the CSF causing orthostatic headaches. Am hoping to hear from london soon. Are you having symptoms with yours too?

https://docs.google.com/viewer?a=v&q=cache:frEIhqM5r5wJ:pediatrics.uchicago.edu/chiefs/inpatient/documents/chiarifrim.pdf+&hl=en&gl=uk&pid=bl&srcid=ADGEESh6V18Uz_rdF27cGAy77pKAieqFSWKFQ3xzxW17TPU9V5rw0-BYf0X7RqNZiApCSnSTf9ZURXjl-hhkUAx4_aA307G7VFnTXAdLrFSgCnIxfzmMxBqTJu5HRK2LwlUFQnKVmSNz&sig=AHIEtbRLiigVCUjjX57QlpIw4UW5CKPsSQ I know it says paediatrics but it discusses Cm1.

Sue that's how my ear problem started off was sensitivity to loud noise. I can actually feel the thumping and reverb in the back of my head. I also get left facial twitches to noise in right ear. Are you in the UK sue? Lukgar mine is 5mm CM1. I have ordered a copy of the 2 last scans as I want to see how the neuro missed it on the first scan. I have found a very interesting PowerPoint about the changes in definitions to chiari. There is a good wealth of info on there too. On it I noticed it says babinski's (plantar response), hyper and hypo-reflexia which is what my neuro found over a year ago. I think they are going to classify chiari as C1, C2 and so forth. I shall try dig it out and post it. How do you know if you have sleep apnea?

Hi sue. About a year and a half ago I noticed that certain sounds would make my left ear thump like crazy and it felt uncomfortable. Couldn't work out why it seemed when I turned my neck to the left it would stop. Then one day I had headphones on and my ear on left went crazy so I took out the left ear piece but it carried on thumping, and it only stopped when I took out the right one. I told the ENT guy and he said I had an abnormal contralateral acoustic reflex. He said that something was awry in my brain. I have to go to see an audiological scientist for further testing on this to try and find what part of the reflex or where in my brain it is 'faulty'. Have you got problems like this too sue?

Hi I had all my tests at the NHNN. Am due there at the end of May to see him again. The staff at the autonomic unit are lovely - not like the usual NHS lol!! I hope you get down to the bottom of this. Good luck

Hi everyone I had the appointment and the neuro told me a year or so ago that all my symptoms were functional and caused by stress. He is the neuro I saw the other day and he cannot believe he missed it on the mri a year or so ago and he apologised. He is going to go back to the other hospital and check the mri and speak to the staff to teach both them and himself. This has given me no faith in what he has said and so I have left a message with the neurosurgeon I saw at NHNN London about what has happened and am waiting to hear from them. So for the past year because I was told my symptoms were stress related, I have had all the symptoms but have just put up with them, not mentioned them to my family, had no support, felt like I must be going crazy etc when all along there was a reason for it all. I am relieved but scared at the same time. Relieved to know I am not imagining the symptoms!! The local neuro said that he wants to compare the last two scans to see if there has been a rapid progression and that I need another mri in 6 months. So at last I have an answer. He doesnt think it is causing the autonomic symptoms yet he believes it is affecting my crossed acoustic reflex - this makes no sense as that means it should affect both if the cerrebellum is pushing on the brainstem. I hope that NHNN call back soon.

Hi everyone. Sorry I didn't reply yesterday but it all felt a bit surreal!! I got my results over the phone and they have booked urgent appointment for today so until then, all I know is that I have CM1. I have had the worst headaches ever-a lot of which are orthostatic and that makes sense as chiari affects the CSF. I have been getting really bad neck pain and only 2 weeks ago booked in with a chiropractor as it got to the point that if I slept on my stomach with head turned to side I would wake up and couldn't move. I have been having lots of hearing problems so my neuro sent me to an ENT to look for an acoustic neuroma. He didn't find that but found CM1. Bren I hope your results come back ok of your MRI and you and your son have been well? Let us know what your results are and I hope it's ok. Got an hour or so before I leave for my appointment to find out what is going to happen. The NHS in the UK keep you waiting for weeks for appointments usually, so as I got an appointment the next day it has made me worry more!!

this is going to be short as am in a bit of a state but have been told that I have chiari 1 this morning - could this be the cause of my dysautonomia? many thanks

Hi there Not sure if there is a link but my son has ehlers danlos and autism. A London hospital were doing research and when I spoke to someone, they stated that there seems to be a high prevalence of autism in people who are hypermobile or vice versa. And it seems that people with EDSH can be prone to pots. Sorry I can't be more specific but it's just a thought

Sorry about you abscess but your humour is superb!

Wow thanks for that detailed reply. So many people on this site seem to understand it all so well - wish I did. Can I ask what AAG is? I have not heard of that. It obviously is something medical so how does it affect us? My pulse before I went down the stairs was 89 so dropping is odd!

Hi and thanks for your reply. Very different reaction to what is normal for me. It doesn't seem a normal reaction after walking upstairs for anyone as heart rate usually rises even with mild exercise. I can understand the heart slows when BP rises but just not after stairs which normally give me a hr of 150 minimum.

When I went to the autonomic unit they said I have orthostatic headaches. They gave me no reason for them and were blasé about it so I presume it could be pots related and lack of blood flow. I also get the neck pain with it too. Last year I had them so bad but they have eased for me if late thank goodness.

Hi For the past few years after walking back upstairs in the morning, I get a really rapid heart rate and a rise in BP but not too much. This morning I walked up the stairs and didn't feel normal (well like I usually do but hardly 'normal' !) so I took my BP and it was 131/112 hr 76. Took it again just to be sure and it was 201/137 hr 65. My hr in the morning usually races up to the 180s after doing stairs but it seemed the higher the BP the lower my heart rate. This is so not normal for me. Can anyone explain this for me as this is something new to me.

Hi SUSD, thanks for the reply but I have since been told that they do this to with lack of blood to the brain whilst standing - well I was certainly flustered and confused by it so my brain must have been empty lol! Does anyone know if a faint bought on after cannula would be a false positive??