anna

(My Dr. is recommending I take either Prilosec or Pepcid --- I have constant pressure? in the stomach/sternum/spleen/rib area -- an ultrasound was done and nothing was found. He said it's probably gastritis and to try an OTC acid medicine. I really try to avoid taking anything because I seem to have a bad reaction to EVERYTHING and I am now fearful of all medicine. Should I take Pepcid or Prilosec and is there ANY chance of bad side effects -- especially dizziness or heart symptoms? How have any of you done on these medicines?) Hello, if you are concerned about the meds you might want to try eating apples!! I know sounds really odd but my son had a bout of very bad GI pain due to his ANS stuff and EDS, we did loads of Internet searches and found that eating apples could help with some forms of GORD GERD, so he gave it a try and it did help a lot, so if you can tolarate apples it might be worth a try, not apple juice by the way it does not help.

I have been on CCB for some years now, I was put on them due to massive BP highs, I tried most BB but they made my BP low's way too low and I would also get a lot of bradycardia. So I was put on CCB they have oddly helped reduce my angina type spells, (so it seems my angina type attacks were probably a rare form of angina!!!! ) I find if I do not take the CCB I get my Migraines with avengance, I realise why now, the cerebral spasms makes! so much sence! Infact it is leading me to think that many of my symptoms are due to spasams here there and every where. Laura you know your body best and we all react difrantly to meds, I can say for me CCB's seem to be helping, I do have CEDS so I think my blood vesscels are affected, I guess that is why the CCB's might help me. I do not think CCB's have the same rebound thing as BB's so you can stop taking them any time, also CCB's do not react with so many other meds.

Both my sons have chronic Hematuria and protinauria, this has been going on for 2 years or more!! After one of my boys had 3+ episodes of gross bleeding on urinating, he was sent to a urologist for a work up, kidneys fine bladder fine etc. Dr. explained he thought that the frank bleeds and chronic hematuria are due to my sons EDS. My other boy had over active bladder, protein and blood found most of his urine samples, since very young, he has also had long bouts of urine and serum osmolarity abnormalities.

My twin boys have been having odd bouts of feeling very hot inside but being cold to the touch, it tends to come on when other POTS symptoms are bad. Also when they have hot (temp) food they start to get very itchy manly head down to shoulders it is so odd, they look like a couple of monkeys, sizzling hot ribs in one hand and scratching with the other, we do get some odd looks!!!

Yes me and my 3 children all have neck wobbles! instability, I had a brain and spine MRI that was said to be ok!!! my neuro thought my symptoms (numbness down one side migrains visual stuff might be neck related. Sadly he retiered and I never had a follow up appointment. All my 3 children have unstable necks and also have had POTS like symptoms since being very young children actually sisnce they started moving around on 2 feet. we have been re diagnosed with classical EDS, my dad and his side were CEDS and had many ANS things going wrong, my mum and her mum HEDS have and had many ANS related problems, we do not really know to what extent necks have been a problem but most of them had migrains of one type or another.

My 3 children take liquorice root 420mg tabs, it does seem to help retain their fluid not so much peeing all the time. You might find this of use taken from a peace medicine site:- Traditional Use Historical or traditional use (may or may not be supported by scientific studies) Licorice has a long and highly varied record of uses. It was and remains one of the most important herbs in Traditional Chinese Medicine. Among its most consistent and important uses are as a demulcent (soothing, coating agent) in the digestive and urinary tracts, to help with coughs, to soothe sore throats, and as a flavoring. It has also been used in Traditional Chinese Medicine to treat conditions ranging from diabetes to tuberculosis. Active Constituents Active constituents The two major constituents of licorice are glycyrrhizin and flavonoids. According to test tube studies, glycyrrhizin has anti-inflammatory actions and may inhibit the breakdown of the cortisol produced by the body.1, 2 Licorice may also have antiviral properties, although this has not been proven in human pharmacological studies. Licorice flavonoids, as well as the closely related chalcones, help heal digestive tract cells. They are also potent antioxidants and work to protect liver cells. In test tubes, the flavonoids have been shown to kill Helicobacter pylori, the bacteria that causes most ulcers and stomach inflammation.3 However, it is unclear whether this action applies to the use of oral licorice for the treatment of ulcers in humans. An extract of licorice, called liquiritin, has been used as a treatment for melasma, a pigmentation disorder of the skin. In a preliminary trial,4 topical application of liquiritin cream twice daily for four weeks led to a 70% improvement, compared to only 20% improvement in the placebo group. A preliminary trial found that while the acid-blocking drug cimetidine (Tagamet?) led to quicker symptom relief, chewable deglycyrrhizinated licorice (DGL) tablets were just as effective at healing and maintaining the healing of stomach ulcers.5 Chewable DGL may also be helpful in treating ulcers of the duodenum, the first part of the small intestine.6 Capsules of DGL may not work for ulcers, however, as DGL must mix with saliva to be activated.7 One preliminary human trial has found DGL used as a mouthwash was effective in quickening the healing of canker sores.8 Dosage How much is usually taken? There are two types of licorice, "standard" licorice and "de-glycyrrhizinated" licorice (DGL). Each type is suitable for different conditions. The standard licorice containing glycyrrhizin should be used for respiratory infections, chronic fatigue syndrome or herpes (topical). Licorice root in capsules, 5-6 grams per day, can be used. Concentrated extracts, 250-500 mg three times per day, are another option. Alternatively, a tea can be made by boiling 1/2 ounce (14 grams) of root in 1 pint (500 ml) of water for fifteen minutes, then drinking two to three cups (500-750 ml) per day. Long-term internal use (more than two to three weeks) of high amounts (over 10 grams per day) of glycyrrhizin-containing products should be attempted only under the supervision of a doctor. Licorice creams or gels can be applied directly to herpes sores three to four times per day. DGL is prepared without the glycyrrhizin in order to circumvent potential safety problems (see below), and is used for conditions of the digestive tract, such as ulcers. For best results, one 200-300 mg tablet is chewed three times per day before meals and before bed.9 For canker sores, 200 mg of DGL powder can be mixed with 200 ml warm water, swished in the mouth for three minutes, and then expelled. This may be repeated three or four times per day. Side Effects Are there any side effects or interactions? Licorice products that include glycyrrhizin may increase blood pressure and cause water retention.10 Some people are more sensitive to this effect than others. Long-term intake (more than two to three weeks) of products containing more than 1 gram of glycyrrhizin (the amount in approximately 10 grams of root) daily is the usual amount required to cause these effects. Consumption of 7 grams licorice (containing 500 mg glycyrrhizin) per day for seven days has been shown to decrease serum testosterone levels in healthy men by blocking the enzymes needed to synthesize testosterone.11 However, in another study, a similar amount of licorice had only a small and statistically insignificant effect on testosterone levels.12 As a result of these possible side effects, long-term intake of high levels of glycyrrhizin is discouraged and should only be undertaken if prescribed by a qualified healthcare professional. Consumption of plenty of fresh fruits and vegetables to increase potassium intake is recommended to help decrease the chance of side effects. According to the German Commission E monograph, licorice is inadvisable for pregnant women as well as for people with liver and kidney disorders.13 De-glycyrrhizinated licorice extracts do not cause these side effects since they contain no glycyrrhizin. Are there any drug interactions? Certain medicines may interact with licorice. Refer to drug interactions for a list of those medicines.

So sorry for your loss, gentle hugs are sent your way.

Dear Erika, I am so sorry you are having to deal with all this at the moment, I don't have much constructive help except to say keep posting, folk here have an idea of what you are going through and actually care what you have to say. On a medical line have you ever seen the: WE MOVE? Web Site, the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. (Well that is what they say)!! I have found it helpful at times, I have a form of multi focal myoclonus and have found some good info on this site, lots of folk with lots of odd goings on, you might find something on there that sounds familiar to you! Sending you lots of possitive energy, Anna

I was 5' 8'' (lost about 1 1/2 ''!!) and never went much over 130 I ate big portions of food, more like my male friends! All my friends always commented on the amount I would eat, but I got shaky etc. if I did not eat enough and I did not put weight on so there must have been a reason behind it. Any way now after 3 children and going into early menopause I became very over weight, with no signs of it shifting I might add. This happened to my mum and my gran. The odd thing is I am diagnosed with EDS my geneticist believes that my mum and gran most likely had HEDS as well, my mum has some odd ANS stuff going on and always has, as did my gran. To add to this my dad?s side of my family the geneticist said most definably had CEDS, they all were so thin when young but at around 40 put on lots of weight, males and females. Also they all had odd ANS things going on from young too. I think there is a link with all this, may be something going on, on micro vascular level. The funny thing is when I was finally referred to a cardiologist I was told all my problems were due to me being overweight even though my GP had put me on meds for very high BP swings arthmyia, angina type pain, etc, when I was around 130 pounds. Oh yes,! and my kids have been diagnosed ANS dysfunction and are ravenous sticks on legs (when not having GI problems) as well.

I just found this on the NHS choises page If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP. This legal right, which was introduced in April 2009, lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs. So if you add this to your legal right for a second opinion then maybe you have a chance!!!! We live in hope. Anna

I am based in deepest darkest devon! So limited access to hospitals, as my neurologist works in all the local ones. Hi Rach, Me and my kids live in Devon too, my three children have a tentative diagnosis of ANS dysfunction, probable POTS, but not much joined up thinking from their Dr.'s. My children see a cardiologist from Bristol, he comes down for paed. clinics in Exeter. He does do adult clinics but they seem based in Bristol. Hope it is ok to post his name here you can find his contact details on Dr. fosters dirctory: ■Title: Dr ■Forenames: Robin Peter ■Surname: Martin ■Gender: Male ■Primary Medical Qualifications: MB ChB ■Date of registration: 06/08/1980 ■GMC number: 2482703 ■GMC Specialties: Paediatric Cardiology Anna

Myself and my children get something like this when we have an adrenalin surge, anxiaty levels go off register! Could that be what you are feeling?! My daughter likes Bech flower rescue remady, helps her calm. We have tried CBT for one of my boys as his adrenalin surges triger his OCD's big time, it has helped some. Anyway have you looked into this adrenaline side of POTS?! Hope you find some way of dealing with this soon.

I have had a run of migraines over the last week 10 days then, we (in UK) had a sudden very cold spell, I think that changes in pressure can set off my migraines, as does hormone changes, actually more and more stuff seem to set them off these days. I have what seems to be classic migraines with the aura and some neuro issues; numbness one sided vision loss hours as apposed to minutes, aphasia (sp?). My mum has a history of migrains and so did my dads side, guess I did not stand a chance of getting away without this really! Both sides of my family had EDS and we were told the migrain stuff was most likly related to the EDS, oh joy!

I have good news...........No mutation was found in MLH1, MSH2, MSH6 sequencing for lynch syndrome. Dear Maxine, So glad that it came back clear and good for your brother?s oncologist for listening to your concerns, I agree with the need for early screening. It makes sense given your family history but more over it is so important to know what is going on in our bodies, so that we can better deal with what is thrown at us if that makes sense!! Have you ever been offered one of those pill camera things? A friend of mine had this procedure it was very helpful in his case, they got some very good images. Anna

Have you ever read this article?! :- Ehler Danlos syndrome with cervical dislocation: An unusual case Neeraj Awasthy, Karam Chand Departments of Pediatrics and Neurosurgery, Safdarjung Hospital, Maulana Azad Medical College, LNJP Hospital, Delhi-110 029, India Sorry I can not link this article for some reason, well I'm not to good at all this techno stuff. Anyway it might make some interesting reading, not sure, I stumbeled across it while looking up stuff re my and my kids necks. Anna

About a week or so ago I watched a move on HBO about Temple Grandin. It was very moving, and when she talked about people not uderstanding her, and how hard it is when she gets overstimulated, I cried---I coudln't control the tears. I know that feeling-----(I always refer to it as wanting to climb out of my own skin). If I didn't have this the rest would be easier to deal with. It is so odd you say this because one of my boys has high functioning Autism, as well as the ANS stuff and EDS, these conditions always seem to have a knock on effect on one another. This is why trying to find meds to help has been a nightmare as one condition seems to effect the other so much. When he is stressing about something (ie Autism predominant, having to see new people and such like his ANS stuff flares up very bad making him very POTSie.

Hi Ericka, I have noticed that more folk with EDS and GERD seem to end up with this condition, probably due to weaker tissue in the esophagus that is a constant wash with acid from the GERD. Do you take any thing like 'Gaviscon' to line your gullet, my kids are on this and ppi's to reduce the risk of erosion. They also sleep head raised to help reduce acid backing up. Anna

Hi Dani, So glad you got it checked out, the sinus thing might be to do with all that extra blood with all those nice hormones little baby has you circulating, hope it clears up soon. Look after yourself. Anna

Maxine I hope your Dr.'s find some way to temporarily stabilize your neck so you can have the procedure done without neck problems cropping up. Have you been on the US EDS site do they have any ideas that might help? I guess you have tried a non invasive halo etc. You need to find a good engineer to cook you up something! Take care, Anna

Dear Maxine, I am so sorry you are having to deal with all this, but I do think you are right to go down the testing route. I feel it is so important that if you find out you have this condition in the family you can all be monitored and maybe try the aspirin trial. I have a friend who has had colon cancer, it was picked up swiftly as she is checked regularly for polyps and has CT scans yearly as she has a form of familial cancer which she discovered after her mum passed away, now she has made sure all her children will be screened when needs be. Re: Colonoscopy I had one twenty years or so back before we had any idea about the EDS, I was fine with the procedure, the young techy was well surprised at my large bowel being in the wrong place! I think I should have had an idea then that I was not quite as well put together as I should have been after that comment!! they did not over gas and I guess they were very gentle as I had not untoward after effects from the procedure. My guts are very delicate I get ulcers from vitC tabs! I have a history of poor healing, I hemorrhaged after both my pregnancies so guess I am a tad weaker in the blood vessel department. But I got through the colonoscopy OK, so maybe if all the Dr.'s are very careful and on the ball about your ongoing medical issues you could maybe go ahead with the procedure. I do not have your neck issues quite as bad as you yet but I have always had some instability I can give myself instant migraine if I put my head in a certain way!! I hope your Dr.'s can work something out meanwhile you take care of yourself, sending you lots of positive energy. Anna

Hello Dani, Yes a sinus infection could make dizziness worse, but please please do not rule out things like preeclampsia (SP?) as far as I understand it, it is much easier to miss if you have pre existing chronic low BP. Make sure your OB is keeping a check on your BP, warning over! Take care Anna

I get this when ANS stuff is bad and I find if I prop myself up with lots of pillows and such I can get some sleep. If this is a new thing for you I would get it looked into if it continues.

I dont get the bruising thing , so maybe I dont have it. Not all EDS people get noticeable bruising, especially in the hypermobility form.

For those of you with MCAD would any of these complaints go along with some type of MCAD? I do have seasonal allergies which are worst in the spring and fall. Hello Chaos, Without a doubt my ANS stuff is worse when my environmental intolerance is worse, which tends to start with the tree pollen season, then other pollens in late Jan early Feb, through to mid Sept. I have noticed that my children's ANS symptoms are also more noticeable then too. Interestingly my children's gut issues are also much worse if they have a virus. The minute they get a bug they have extra bad acid reflux that Omeprazole does not touch and they down Gaviscon like it was water!! When one of my boys was on steroids and antihistamines for nasal polyps he oddly had less ANS symptoms. Anna

Hello Sara, Hope the hip pain gets sorted out soon. 1) Have you ever injured yourself without really "doing" anything? Up until this time, there was always a true cause. This time I had a really hard time pinpointing what happened, and can only trace it back to the little slip. Oh yes many times, the annoying thing is that most of the time people especially DR.'s have great difficulty believing you could have actually hurt yourself as there was little or no trauma!! My son had a wrist fracture, due to tripping while running, but it took a month for Dr.'s to look a x rays properly!, (as only old people break stuff in low impact falls apparently)! then it was too late to immobilise etc. his wrist is now very weak!! 2) How do you handle the embarrassment factor/ explaining to everyone what happened? Maybe I am more sensitive than most as I was teased unmercifully during childhood for always getting hurt and never being able to run and play. (I was on crutches for 6 months in 4th grade to try to heal an ACL tear) I hate that I am on crutches and will throw them off to the side if I can get around without them. This time the pain is so bad, I can't. I'd rather deal with the invisible illness of POTS sometimes because you can just say you have a heart problem and no one questions that. I say to heck with embarrassment, if being on crutches etc. if it helped me get around then brill as I want to get on with things! Time is too short to have to worry about what others think, fact is what ever happened, happened and you are dealing with it not them! Anna Sara