flop

Not everyone with POTS gets migranes (I don't think that I do!) but there does seem to be a strong correlation between POTS and migrane. I believe that migranes are often due to reduced blood flow to part of the brain so it would make sense that with our dodgy blood pressures we might be at higher risk. Migrane is not simply a bad headache it is a combination of some/all of: headache; nausea; vomititng; photophobia (dislike of bright light); visual symptoms; dizziness and many others. Strangly you can also have silent migranes where there is no headache. Another variant is hemiplegic migrane where one side of the body becomes numb or weak like a stroke (must be really frightening to have that happen). Probably a visit to your PCP to discuss the symptoms would be a good idea. Flop

I don't think that any centres in the UK advise IV fluids for POTS except for emergencies when you can't keep any fluids down because of vomiting or during surgical treatment. I have friends who have gone through chemo, and one who has cystic fibrosis so has to have lots of IV antibiotics for chest infections. For chemo Hickmann lines are fairly standard but having a line in your chest means that you can't get it wet or take a bath. Having a port is a bit more invasive but because the port is under the skin when it doesn't have a needle in for access you can bath/shower as normal. The main risk of these long-term IV access options is infection - the plastics used are a natural breeding place for bacteria and line infection can lead to life threatening sepsis. It is a risk/benefit equation that you will have to discuss with your doctor in respect to your individual situation. There is a sort of half-way option (still has the infection risks but is much less invasive) which is to consider a PICC line (peripherally inserted central catheter). A PICC is a very fine tube that is usually placed in the arm and reaches up into the central circulation inside a vein. It allows drugs or fluids to be given (slowly) and can be kept in place for several months. Let us know what your doctor advises. Flop

Could it be a migrane? Does it get better if you sit quietly in the dark? Just a thought, Flop

Kayjay is quite right - I had assumed you meant skin prick testing or patch testing. Flop

Ah, Maggie that makes more sense - if it was to numb your eyes before measuring the pressure (tonometry) it will have been a mixture of both fluoresceine colour and a local anaesthetic like lidocaine. I think some of the local anaesthetics are also mixed with epinepherine (adrenaline) so it is more likely to be the local anaesthetic or epi that made you so ill. You'll have to ask for a bit more info about the drops. Flop

I've never been on clonidine so no experience there but I have had to wean off other meds super-slowly. My doctor always advises changing to a liquid preparation of the drug and using an oral syringe to measure the dose. That way you can reduce the dose much more slowly and minimize withdrawl effects. For example instead of taking half a dose you can take 9/10 of a dose. If he doesn't improve or you don't hear from Dr Rowe quickly then it might be wise for him to take a full tablet next time he is due a dose. If weaning off is really hard maybe he should try during vacation time? Hope he's feeling better soon, and hugs for you too! Flop

Beta-blocker during allergy testing is fine, it won't mess up the results. The problem is that beta-blockers can sometimes make allergies worse. In the UK you aren't allowed to have injection desensitization treatments for allergies if you are on a beta-blocker at all (increased risk of anaphylactic shock), but I know some forum members are just told to skip a dose on the day of the injection. Flop

I have horrible problems with seasonal allergies (well almost all year round allergies!). When my hayfever is bad then my POTS gets worse too. I seem to have been a bit better the last few weeks on a massive, massive dose of antihistamines. Flop

Maggie, was it definately fluoresceine they put in your eyes? There are three different types of eye drops often used in eye examinations. Fluoresceine is an orange coloured drop (your tears are orange afterwards) that is used to check for any damage to the surface of the eye. They put the drops in then shine a blue light over your eye - if there are any scratches or ulcers they glow green. It is normally done for people who wear contact lenses to ensure that there hasn't been any damage to the eye. Dilation of the pupil (making the pupil go very large) is done so that the doctor can have a better view of the retina at the back of the eye. They are looking in through the hole of the pupil so making the hole bigger lets them see more easily. Drugs that cause pupil dilation are called midriatics and there are two different groups. Antimuscarinics (Atropine, Cyclopentolate, Homatropine, Tropicamide) and sympathomimetics (Phenylephrine) The third eye drop (used less commonly) is to numb the surface of they eye before detailed pressure measurements of the eye are taken (called tonometry, different to the puff of air test done in most opticians). The numbing / local anaesthetic drops are Lignocaine, Oxybuprocaine, Proxymetacaine and Tetracaine. They do make a drop that is a mixture of Lignocaine and Fluoresceine. From all the different eye drops that I have just looked up (I love the British National Formulary for getting information about medications), the one that seems most likely to have caused your symptoms is Atropine. Atropine is used as an injection in emergencies where the heart is beating too slowly and I know that it can be absorbed through the eye to cause effects in the rest of the body. I have cut and pasted the bit about the side effects of antimuscarinic eye drops for you below. Flop

I've now found the doseage info. Yasmine Ethinylestradiol 30 micrograms, drospirenone 3 mg Yaz Ethinylestradiol 20 micrograms, drospirenone 3 mg Yaz has less oestrogen than Yasmin so they are not identical, but the bit that has diuretic effects is the drospirenone which is the same dose in the two different pills. Flop

Internet searching hasn't told me if Yaz and Yasmin are actually identical birth control pills. The are both made by the same company and contain the same two hormones. I've found the doseage of the hormones for Yasmin but not for Yaz - does anyone know the dose of the hormones? YAZ drospirenone & ethinyl estradiol Yasmin Ethinylestradiol 30 micrograms, drospirenone 3 mg Drospirenone is a very mild diuretic so will cause you to pee a bit more than usual (it is often prescribed to women who get pre-menstrual ankle swelling). I take Yasmine and haven't noticed any worsening of my POTS, or any improvements in the 6 months that I wasn't taking it. Flop

The doctors often most knowledgable about autoimmune disorders are rheumatologists. They usually see patients with all sorts of joint problems, arthritis and connective tissue diseases such as Lupus, Ehlers-Danlos Syndrome, Myositis and Vasculitis. Obviously the experts on ulcerative colitis would be a gastroenterologist and a urologist for interstitial cystitis but maybe a rheum might be helpful. Don't expect a rheum to manage your POTS though, usually cardio, neuro or some endos for POTS. Good luck in your search for a helpful doctor. Have you checked out the physician list on the main DINET website, there maybe someone near you listed there. Flop

By open spine on the inside do you mean "spina bifida occulta"? My Aunt had severe spina bifida (died in childhood) and I have the occulta version (found by chance when I was investigated for back pain in my teens). I asked if there could be a link between POTS and the spina bifida but I was told that there was no link between the two. Flop

According to the doctors I was 2 weeks overdue but my Mum says by her dates I was right on time. Jaundice is very common in new born babies, especially if breast feeding. Flop

I had an echo to specifically look at my aorta done just last week. I hadn't had an echo for several years and I don't know if they had looked closely at the size of my aorta previously. I asked for the echo because I was refused life insurance cover. The insurance company said that I ws high risk for aortic dissection because I have hypermobile EDS. My cardiologist thought they were wrong about my risk but ordered the echo for me anyway. The technician who did they echo said everything was fine but wasn't allowed to give me any details. I don't have follow up with my cardiologist for ages so I think I will phone and ask for a copy of the echo report (in the UK we don't usually get copies of any results or notes about us). Maxine, I'm thinking about you and your friend's family - I hope that awareness of her death will prevent other premature deaths from EDS complications. Flop

Hi Jenn, I take Ivabradine for my POTS. In fact I managed to meet Prof Julia Newton at a patient's day conference in the UK last year and ask her a couple of questions about it before I started taking it. I use it instead of a beta-blocker (I had to come off beta-blocker because of allergies). It does help me a lot (I would be useless without either Ivabradine or a beta-blocker as my heart rates used to hit 170 daily). Personally I wouldn't describe it as a wonder drug - I don't believe that there is a wonder drug available (POTS is too complicated and has too many different subgroups for there to be one magic tablet for all of us) but it is a huge help. Feel free to PM me if you want to chat about it. Flop (Friend of someone who was an RAF wife in Germany for many years!)

I can only give you my guess as to what is happening with your BP numbers. Initially your BP looks like it is trying to elevate to help keep you upright, but then it gets to a point where it can't compensate any more so starts to drop again. In "shock" such as when someone is bleeding lots from a serious wound the BP will be normal, then the HR rises, then the pulse pressure narrows (the systolic and diastolic numbers get closer together) then finally the BP drops. I am not in anyway suggesting that you are bleeding or in shock but just wondering if the same pattern happened to you when you stood up on this occasion. I would do the same readings again several times (different days but also different times of day) and take them with you to your next drs appointment. Hopefully they will help your doctor to see what is going on with your BP and figure out which meds to try. Flop

How awful to wait for results but not get a conclusive answer. I hope that you manage to get the test covered by insurance. I don't know if you are wanting information on Fabry but if you do this UK website looks good (it has been written by the genetics branch of Shire a biopharmaceutical company). Let us know how you get on with the insurance company and further testing. Flop

Oh thanks! Looking forwards to reading it! Flop

Hi Dani, I'm sorry you have been left feeling scared and without information. Was the EKG showing ventricular ectopics / premature ventricular contractions ? They are very commonly the cause of palpitations (feels like thudding in your chest) but are actually quite normal and whilst frightening aren't dangerous. Did the hospital give you a reason for the numbness? Did you have any weakness? I just wonder if this could have been some sort of weird migrane triggered by the pregnancy hormones? I would follow up with your PCP as soon as you can and see an obstetrician too. Hope everything checks out okay for you, Flop

I'm only copying info from other forums but from what I have read it sounds like the generic Disopyramide CR made by Ethex has been recalled and that they possibly no longer make the generic. Pfizer are still making the brand Norpace CR but when the Ethex went off-sale the demand for the brand norpace CR was so high that pfizer's manufacturing process couldn't keep up with the demand - hence the lack of supply at pharmacies. The cardiac forum seemed to be saying that the brand version is going to continue to be available but not the generic. I would advise telephoning the customer helplines for pfizer for the latest information about availability and long-term plans for Disopyramide. Flop

This article from the BBC website has a good explanation of the stress related hair loss. Flop

I've not heard of either florinef or klonopin causing hair loss, however it is recognised that hair loss can be caused by stress or illness. There are a few minerals/supplements that can help with hair growth, off the top of my head I think that kelp (seaweed - rich in iodine) and magnesium were two of the main ones. (Sorry I would normally look it up on my lovely drugs / herbs / vitamins book but all my stuff is in storage at the moment, if I get a chance I will do an internet search). Flop

The idea with tilting the bed is that your whole body is at an angle (head highest, then shoulders, then hips, knees and feet). This means that gravity pulls the blood down into your feet and 2 thoughts - either your body has to work to keep your BP up or your body increases fluid volume (via the kidneys) to compensate for the gravity effect. By using a wedge pillow you are only raising your head and shoulders slightly, not lowering the rest of your body too. Some hospital beds can do a position where the mattrass is flat but on a slope which would be the same effect as lifting the head of a normal bed. The usual hospital bed comfortable position of raised head end and raised feet actually leaves your bottom as the lowest point gravity wise so wouldn't have the same effect as tilting the bed. I haven't actually tried the bed tilting myself, my doctors have never suggested it to me. I have low BP when lying down so if anything my doctors told me to raise my feet at night (I slept much better with pillows under my feet but I felt worse during the day when upright so I went back to sleeping normally again). Flop

Hi, I'm another single female who mainly lives alone. For the last five years I have had a flat about 50 miles away from my parents. It was in a block built specially for people who worked at the company I worked with so I have recently had to move out (stopped working last July but they let me rent the flat for another year). When I was working full time and really ill I actually stayed with a good friend for many months. She is nearer to my Mum's age than mine and has her own teenagers but she took me in like one of the family. However I still wanted my independance - being able to choose what time to go to bed, what to watch on TV, what to eat for dinner etc. When i was over my really rough patch I went back to my flat. I am in the process of buying my own house in the city I used to work in (I still hope to get back to work at some point). I have friends, hobbies and hospital doctors here and it isn't too far from my parents - I can still visit them most weeks. Due to a problem further up the "chain" of house buying I have actually been living with my parents for the last month whilst waiting for my house to become vacant for me to move in. It is nice having my Mum about but I am still trying to do things independantly. For example today I went to Tesco (supermarket) to do a small shop, then used my wheelchair to let me browse in a department store (Mum's birthday this week so need to buy a present). After that I came home and went to bed for a few hours. Then got up and went out for a coffee. Now back in bed and hoping that Mum is going to do dinner as I'm exhausted! When I feel well I stock up on frozen veg, microwave rice, pasta, tins of chicken in white sauce (my favourite stand-by dinner!), long-life milk and fresh meat and fish to put in the freezer. I don't really do much cooking (standing at a cooker makes me feel really dizzy!) but I love having a George Foreman grill. You can take meat or fish from the freezer and put it straight on the grill, you can also slice some veg and put them in the grill too. Easy fresh hot food without much fuss / effort. Good luck, Flop