rach73

Hi, Two weeks ago I started having migraines out of the blue. I havent had proper full blown migraines repeatedly for years. 2 weeks ago yesterday I had two in the space of three days. Usually I have maybe one a year. In the last 11 days I have had three. They start with me feeling unwell and my legs really aching, sensitivity to light and feeling more dizzy than usual. The start of them has been difficult to spot as the symptoms do overlap with my Pots and EDS symptoms. These symptoms start around 24 hrs before. Then I lose a pin prick sized piece of my vision - its very subtle like youve looked at a bright light and are left with glare. The pin prick becomes bigger revealing a zig zag line of triangles with red and blue outlines. This will last anything between 15 -60 mins until thats all I can see and then it vanishes and the pain starts. To be honest its the aura the bothers me the most as I just panic. Im usually a pretty calm person but for some reason - well probably since getting ptosis if anything messes with my sight I panic. I cant control it. During the aura stage I also lose my balance. I immediately get ptosis and my face drops like Ive had a stroke - this is normal for me. I also get pins and needles down my right side and numbness. I get slurred speech and confusion. Again all normal for me when I have a migraine. The really strange thing is no matter how much I drink I dont urinate - so there is an up side at least for a change. It stays like that for 4-5 hours and then I start urinating again! Ive been put on pizotifen by my dr, started just over a week ago but last night I had another migraine. They are just wiping me out as I am very unwell for two to three days afterwards. I use morphine that I take for EDS as a pain killer and paracetamol. Unfortunately the larger dose of morphine messes with my sleep so Ive been up since 1am this morning. Does anyone have any suggestions of things that help/ I dont drink coffee, I dont drink red wine, I dont really eat chocolate my only weakness is cheese - however cheese doesnt seem to be triggering them as I had no cheese yesterday and had a migraine! I am under a bit more stress than usual as my mother in law has just been diagnosed with multiple myeloma a cancer which is treatable not cureable. My husband is having a hard time dealing with this. I want to support him emotionally but I cant do that if I keep having these migraines that are knocking me out for so long. Any advice would be great. Thanks Rach

Hi Joe, Just wanted to wish you luck with the treatment. Rach xx

Hi Kayla, Your periods sound exactly like mine. I really feel for you, Im on birth control to stop my periods as the pain is horrific. I have seen some stuff on youtube which says painful periods can be part of EDS. I also get the sickness and runs as well with it. Have you tried a hot water bottle on your lower abdomen? Have you tried massaging just under your belly button. Sometimes this helps. If the pain is more than you can stand you need to see a Dr and get something stronger. My periods are only pain free when Im virtually unconscious due to the amount of morphine Ive taken. They really are awful. I'd have my uterus removed tomorrow if the drs would agree to it! Dont put up with the rubbish I had to many years ago - being told there was nothing they could do and I needed to have a baby and that would sort my periods out - I kid you not. Demand pain relief. Rach

Hi, I dont get the uncontrollable rage but I have noticed I can get very irritable if my blood pressure starts dropping! Its always a warning sign my family can pick up on that I need to lie down! I'm on morphine due to EDS 3 and if I have to increase my meds I get moody on that. I know thats totally normal! I have noticed I cry much more easily than I used to - I'd like to add I'm not depressed, but if I see a soppy tv advert or watch a tv programme with strong emotional content Im off! Gets a bit embarressing when you have to answer the front door with tears streaming down your face and snot dripping from your nose! lol! Rach

Hiya, thanks for sharing Ive emailed this to my POTS dr - as I do any study that is shown on here. So thanks to everyone who finds these articles! Rach

Hiya, I completely understand how you feel. I developed ptosis out of the blue in January 2007, it affects my right eye (mainly sometimes the left eye joins in as well which leaves me unable to see at all). My eyebrow also droops and the right side of my mouth can droop as well. I have it to varying degrees everyday - midodrine helps stop this but no one knows why, it also responds to mestinon which lead to me being tested for myasthenia gravis for a few years. I have a picture of my ptosis on my blog the address is in my signature. I tend to wear very big sunglasses when its very bad as I like you feel disfigured when it happens. When Ive spoken to the drs about the way it makes me feel they dont seem to appreciate the effect it has on my self confidence. I also find the ptosis messes up my vision - I have depth perecption issues, peripheral vision loss and when both eyes close completely I am totally without sight which has a massive impact on me being able to look after myself. I also find even if the ptosis resolves my eyesight remains blurred for hours afterwards. No one has ever gotten to the bottom of why I have ptosis, but I like you really hate this symptom. Rach

Thanks, I have emailed this to my consultant. Rach

thanks for sharing this.

Hi, I collaspsed after having CT contrast dye. I had a horrible allergic reaction within minutes I felt like I couldnt breathe and my face and neck were covered in huge fluid filled blisters. The stupid thing was It took me an hour to convince the nursing assistant on the ward that I was having a serious allergic reaction! My body temp shot up to 39 and I just felt like I was dying. By the time they called a dr the reaction was starting to wear off. From now on whenever I am having tests in hospital I carry allergy meds because next time they could kill me. Thankfully the Dr realised that he should have been called immediately and there are massive warning stickers all over my medical notes. The strange thing is Ive had contrast dye prior to that and had no reaction. My father also is allergic to contrast and he lost several layers of skin off his hands and feet after having it resulting in him having lost sensation on the palms of his hands and soles of his feet. I think we probably have MCAD running in our family but in the UK it can be difficult to get drs to take this condition seriously. My dad can now only tolerate 2 different antibiotics as he is allergic to everything else, he cant even take ibuprofen as he goes temporarily blind for a few hours after taking it. Rach

Hi and welcome, I was noticing from your signature that you have TMJ, Costochondritis, joint and muscle pain. Have you ever looked up the condition Ehlers Danlos syndrome ? (EDS) Your symptoms are kind of red flags for this syndrome and it tends to run alongside POTS / autonomic nervous system problems. Many of us here on the forum also have EDS, mine wasnt diagnosed until last year - although when you put all my symptoms together it was very obvious. I was disgnosed within ten minutes of meeting my rhuematologist. I also have TMJ and have noticed that when I tilt my head down to read a book my lower jaw just flops forward and it can become quite painful because I dont even realise its happened. I also get bouts of costochondritis amongst lots of other aches and pains. My hypermobility affects my spine the worst and then basically pretty much every joint. It is something worth looking into. Anyway just wanted to say Hi and welcome hun xx Rach

I've had a chiropracter tell my husband he could "cure " my POTS without ever meeting me or knowing my complex medical history. I never went to see him as if hes making these claims to a perfect stranger in my book hes a quack, if he had said I would like to work with your wife and see if I can help her I may have been more interested. I used to go to a chiropractor years ago who used the Bowen technique - extremely gentle and no crunching but the manipulations wouldnt hold and would cause me intense pain for days afterwards. At the time I didnt know I had EDS - my chiropractor knew there was something wrong but had no clue what. In the end I had to call it a day. I am always suspicious of someone who claims they can cure any illness the medical profession is yet to fully understand. But thats my opinion. Rach

I dont have any advice to give you as I am in the UK but this is exactly the same situation I faced. The company knew I was sick, they knew that under the law they were legally liable for making reasonable adjustments for me (at the time I was diagnosed with myasthenia gravis - now POTS etc!) but they chose not to. I took out grievances etc and eventually went and got legal advice and launched an employment tribunal against them as they bullied me out of my job. I ended up settling out of court, nothing has changed at this company they still treat people with chronic illnesses appallingly - a friend of mine has had multiple strokes and been told to stop complaining you've only had a stroke! the fact its a serious brain injury seems to escape them. I really feel for you as its such a horrific experience to live through. Rach

Hi Lindajoy, again I just wanted to add, I have been where you are right now. Ive also not wanted to wake up in the morning as there was no future and no hope. I eventually got through it with the help of reading the posts on this forum and from friends I had made all over the world on the internet. Chronic illness *****, it drags you down and takes you places in your head you would have never dreamed possible. Sometimes it can also be a gift - you may think I am completely crazy, but I think if I had carried on working my husband and I would have eventually drifted apart, my relationship with my parents and sister have also improved because I can spend more time with them - usually just a text or a phone call but that is so much more than I was doing. It made me stop and think and see what was important. Im housebound, usually spend most of my days in bed, life is tough but every day I fight to make a difference to other peoples lives or my own. I still have days / weeks where I could quite happily throw the towel in. I tell myself that these feelings are temporary and try to do things that make me laugh - watch a comedy video, sing (badly) along with my favourite CDs even if I dont feel like it. Before you know it your caught up in the moment rather than thinking about the future. Your grandaughter is a gift to help you through this dark time. Keep focusing on her, each day just live a minute at a time if you have to. Things change, in time and your battle is ongoing. Dont give up. Know that there are many people here that want to help and support you. Hugs xx Rach

Hi, I dont believe de conditioning caused my POTS either. Up until the day I got POTS I worked full time standing most of the day running a busy dept with 130 staff. I ran a house, went out socially and walked my dogs at least 20 miles a week. I was reasonably fit and the correct weight for my height - now horribly overweight! due to steroids in 2008 when I put on 5 stone in 9 months - have lost 3 stone but still need to lose the rest. Ive always been reasonably active and before owning dogs used to walk around 10 miles every week. Ive always had symptoms of POTS - I just didnt know what they were and they became really bad after I suffered a migraine of gigantic proportions. I just simply never recovered. I understand that prolonged bed rest can cause POTS symptoms but these patients tend to get better as they become more active, its more like a temporary POTS - not like the syndrome the rest of us have to live with. Rach

Hiya, Interesting poll. My Consultant doesnt call it severe POTS he calls it Unstable POTS and feels it is unlikely to ever change due to the EDS I also have. Plus my sister also has Unstable POTS and is treated by the same consultant as me. There is obviously some genetic influence at work with us as we both use wheelchairs, although my sisters POTS came about when she was 14 - more than 20 years ago. I had symptoms but they weren't debilitating until 11th January 2007 - yep I know the date and time it started. One symptom we have never shared was ptosis.... until yesterday when my sister developed it for the first time. I just wondered if they call it severe / unstable POTS when you have more involvement of the autonomic nervous system - as in it affects your breathing, temperature control, post prandial hypotension etc? Thanks Rach

My mum has high B/P, shes on medication for it - I think she has Pots, we know she has EDS. She hasn't fainted but will sometimes feel like she is going to faint and she just has to stop what she is doing and lie down flat and wait for it to pass. I have low BP as does my sister and dad, dad doesn't faint but my sister and I have done on occasion. rach

Thank god you posted this topic! I thought I was the only one! lol I am still having problems with midodrine affecting my bladder - 3rd UTI since December, I am still battling on with it as it makes such a difference to me. My head is clearer so I can hold proper conversations, my ptosis isn't as bad, BP gets into the 100/60 bracket rather than being 90/60 or lower. I do have more energy and I am able to be out of bed for longer stretches which is a bonus as I spent most of the summer stuck in my room! I have the side effects of my hair standing on end and my hands going an interesting shade of blue, always cold but then I was before! I notice it wearing off at about 3 hours and then my POTS goes nuts much worse symptomatically for me than prior to midodrine. I get a racing heart - which I had but rarely felt, much worse post prandial hypotension so I have to try and schedule eating around when the dose is most potent. I notice it most when I go to bed at night I have vertigo symptoms for about ten minutes when I lie down initially - whole room spins, and my heart will pound out of my chest when I change position in bed. A massive improvement I have found on midodrine is that when I am in the car I dont have to have my feet on the dashboard (oh Im not driving by the way lol) - I literally start feeling faint as soon as my feet hit the floor - so thats a brilliant achievement for me. But yes the midodrine crash exists, thank you for confirming this. Rach

Hiya, I have TMJ to but no to the extent yours is. The pain can be unbearable and I find when its at its worst I can't really open my mouth, talk etc. I rely on heat pads and a mouth guard. Mine seems to be triggered by stress, when I am stressed I clench my jaw I dont even realise I am doing it. When I am going through a flare I wear my mouth guard 24/7 and it seems to reduce the amount of time it takes for the flare to subside. Im not a tooth grinder as my dentist has found no evidence of this. I really feel for you and hope you can find some relief soon xx Rach

Hi, I just want to explain, I still pee like theres no tomorrow with the midodrine it just takes a lot of concentration, pushing and moving into different positions to be able to pass urine. Im now back on midodrine -first day since stopping amiltryptiline so I will know in a few days if the symptoms are any better. Rach

Hiya, I take cerazette which is a progesterone only pill. In 2009 I came off it for a a few months as I was going into hospital for tests and wanted all meds out of my system - I was only taking mestinon then for suspected myasthenia gravis. Off the pill I was blacking out on a regular basis, it was just awful. After the tests I went back on the pill (cerazette) but not the mestinon - the black outs stopped. I love this medication as I have horrendous period pains ( fainting, stomach cramps that only stop with morphine, vomitting and a runny bottom). The dr keeps saying due to my age he will have to take me off it soon and I will have to have a coil fitted. I have said no to the coil as I have a tilted cervix and it would take them an age to find it. Plus I haven't had kids, a pap smear makes me bleed and have cramps so imagine the fun with a coil!! As soon as I am off the pill I will be asking for a hysterectomy. No joke. Cerazette for me is a wonder drug - no periods and no black outs. Rach

Hi, yes I do have that problem. I also feel like someone is trying to access my bladder with a red hot poker! At last I am not alone do you know how many forums I have asked about this on? Its urinary retention as midodrine also works on the bladder spincter keeping it shut. You need to ensure you dont start getting urine infections due to the retention. I was on amiltryptiline which also works on the bladder spincter so I have changed to gabapentin and will start the midodrine again shortly to see if the side effects are any better. Other than that Im afraid there isn't any advice I can give you - perhaps speak to your dr about lowering the dose and see if your bladder works better on that? I had problems on 2.5 mg twice a day I would be ok for 4 days then needed two days off. As I increased the dose the shorter the amount of time was before I had problems and I needed longer off to resolve the issue. Unfortunately we are the unlucky ones! Rach

I have problems with alpha agonists as they stop my bladder working. Apparently there are a lot of receptors on the bladder spinchter and I am one of the unlucky ones! I end up with urine retention, infections and a whole lot of pain. I'm supposed to be starting midodrine again but I am a bit reluctant due to these issues. I wonder if butchers broom would help due to the relaxation side of it? Rach

the quick answer is all the blooming time! lol I get it everyday, small patches of white with zig zag black stripes - smaller than my usual migraine auras, bursts of tiny blue lights, bursts or flashes of light like a whole block of light, white pin prick lights. Basically loads of it. I tend to go through phases of having it all the time and then it lessens. Its annoying and distracting. I also get black grey floaters which have increased in the last 5 years. Rach

Hi, I was diagnosed by a rhuematologist who has an interest in connective tissue disorders. I was diagnosed within ten minutes of starting the hours appt it was that obvious! Treatment is painkillers, physio and joint bracing. I have tried physio but the woman didnt understand POTS and the exercises exascerbated the pain so I gave up. I try and move around the house as much as I can and do stretches. I use a wheelchair outside my home due to POTS and the fact I have a hypermobile spine - I get muscle spasms and slipped discs if I walk too far I also develop bursitis in both hips. I manage the best way I can with heat pads, hot water bottles, pillows to support me and a good sense of humour! Plus pain killers as and when needed. Rach

I have problems with oxygen saturation and have done for about 4 / 5 years. Ive had all the tests which come back normal - however they only test you sitting down. My oxygen saturation plummets when I move around going up stairs will leave me gasping for breath for ten minutes. I have home oxygen which I use a lot. I not only use it for low oxygen saturation but when I get bad headaches due to my bp being low. I find the oxygen helps get rid of the headache. In the UK they have started giving oxygen to patients who suffer with cluster migraines as they have found it reduces the pain. One word of caution with pulse oximeters - POTS can give you cold extremities and drugs like midodrine take blood away from extremities. This will effect the accuracy of the pulse ox. Try and make sure that your hands are warm before using the pulse ox. Thats always a problem for me as my fingers are like blocks of ice all the time! Rach