flop

In the UK we wouldn't normally use an antibiotic ointment on wounds so I can't comment on the neosporin but it might be worth trying to see if things heal better without it? Some people with EDS (Ehlers-Danlos Syndrome) heal more slowly than normal so it would be worth reading about EDS to see if it might be relevant to you.

Flop

Hi Janey,

I don't really know the answer but I think that if blood is pooling in the abdominal blood vessels it doesn't help digestion and probably makes things go-slow. Were you in the children's hospital or in the National Hospital for Neurology and Neurosurgery that is almost on top of Great Ormond St? I was in the National (Queen Square) but could see into the children's hospital wards from my window.

When I had the meal test it was reported as "normal" (ie my tilt after the meal was no worse than my fasted tilt before the meal). I had a huge beaker of strawberry milkshake to drink (urgh!). They then had me lie flat for a whole hour before doing the post-meal tilt. I found lying flat on my back really painful (I think that probably kept my BP up!). But I also think that my milkshake had long since left my stomach (my worst symptoms are 10-30mins after eating).

When I eventually saw Prof for follow up he said that although my official meal test was normal, that on my 24hr BP test that my BP always dropped and my HR rose every time that I had a meal or even a snack. I know that if I have a full meal I need to stay sitting down for 30 mins afterwards or I am bound to have a faint.

My experience with Prof Mathias is that he is wonderful for the initial consultation, testing, results and first treatment plan. However I haven't had much luck getting any further treatment options from him (but he was away last time I went to clinic). I would advise you to make a list of questions before your next appointment and get as much information as possible.

Flop

You're welcome!

I like to stick to natural stuff too as much as possible, this is one reason I like lactulose (fig syrup) as it is really gentle but effective. If the prune juice helps you, have you tried actually eating prune fruits? (Prunes for breakfast is a very traditional British "old wives tale" that actually works).

Flop

Alicia - autonomic dysfunction is enough for a doctor to know what you are talking about.

I have had IDs from two different companies (in the UK). My first was from Medi-Tag (good necklace but I had to pay a yearly subscription for the telephone information service). My current one is from Universal Medical ID (UK and USA branches) and has a free telephone service and a website where I can upload my own medical details, the ID number to get access to the website is on the bracelet. I was suprised at how much information could be put on this tag, my old one had much less space!

My engraving reads:

Front

Autonomic Dysfunction

Syncope, POTS

Ehlers-Danlos III

Hypermobility Type

Asthma, Allergies

Back

www.myOMR.com (ID number)

(full name)

(DoB) (NHS: number)

Epi-pen carried

I also keep a card in my wallet with a full list of my medical problems and my current medication and dosages.

I like knowing that should anything happen to me and I can't talk to the paramedics / doctors (even something non-POTS related like being in a car accident) that the information is available and someone can contact my family (both the telephone line and the website have the contact details for my sister and parents as well as all my medical info).

Flop

Hugs ((((((((((Lieze))))))))))!

What a horrid situation to be in. It is hard to guess what these other staff are thinking, I suspect that they may be jealous of you. Perhaps they think that you are a lady of leisure who can afford to just work a few days a month and that you don't really need a job? Maybe they think that one of them should have the job you are doing? The one who is studying to become an RN may certainly be jealous that you are an RN and are good at your job. Sometimes people just take a dislike to someone for no real reason at all.

If they were just making you feel uncomfortable then you could just try to ignore them. However if they are repeatedly telling tales to your boss then it might be wise to share what is happening with your boss or with someone at an intermediate management level (do you have a lower-level boss or shift leader that you could talk to?). One idea would be to ask for an appointment to talk to your boss and simply ask outright if there are any concerns about your work performance. If they say yes then you can find out what the issues are, if they really are problems or if it is just someone telling tales. If there are issues then it looks good that you are taking the trouble to find out and correct them yourself. If there aren't any issues or it is all tale-telling then your boss should know that these women are giving you a hard time. The shouldn't be allowed to make you feel like they are out to get you into trouble. Once your boss is aware they can watch out for any future complaints from these staff and maybe handle them differently.

Do you have a union rep or anyone similar that you can get any advice and support from? Is there a supportive collegue who has noticed the behaviour of these other staff members and would back up your side of the story?

You do not deserve to be treated like this at work, if your work is of a good standard (and it sounds as though it is!) then no-one has the right to make you feel like this, it is bullying and you deserve better.

I hope you manage to get this sorted out so that you can return to doing your job and are able to enjoy going to work.

Flop

Hi Janey,

it is interesting that you have been able to note a regular pattern in both your HR/BP and GI symptoms. You mention low BP in the morning and in the afternoon, is it lower in the afternoon?

I sounds like in the morning your body is able to generate enough of a tachycardia to partially compensate for the blood pooling and is trying to keep your BP up.

Later in the day it sounds like the body is no longer able to compensate and the tachycardia isn't happening (do you take meds to lower your heart rate that might take until 2pm to work??).

I wonder if it is actually your BP dropping that is causing the worsening of the GI symptoms later in the day?? The gut needs a decent blood supply (ie adequate blood pressure) to allow it to digest and absorb nutrients properly. If your overall BP is lower in the afternoon then the body will try to shut-down non-essential organs and send the available blood to the vital organs (heart, brain, kidneys). It may be that after 2pm your BP is so low that digestion is being "switched-off".

Of course the opposite can also be true - the GI system needs more blood flow after eating to allow digestion and absorption of nutrients. In some people blood is diverted to the GI system (pooling in the splanchic circulation) which then causes the BP to drop and postural symptoms to get worse.

Where are you being tested? Are you in the UK? Your tests sound like some of the ones I had underProf Mathias 2 years ago. If you have the results of the tests I might be able to have a better guess at what is going on.

I hope that the testing leads to better treatment for you,

Flop

Hi Janey,

wikipedia can be a wonderful way of quickly finding information but it can also be very misleading. Because anyone can write and edit the articles and they are not proof-read or peer-reviewed like medical journals and books there can be some huge mistakes in the information.

In regards to this specific article I think that there are several issues:

- Parkinson's disease is a degenerative neurological condition.

- EDS is not a neurological condition, nor is it degenerative.

- Parkinson's disease is associated with generalised autonomic dysfunction as part of the neurological disease process.

- EDS is associated with POTS as a specific form of autonomic dysfunction.

- The autonomic problems of Parkinson's are often progressive and degenerative.

- POTS due to EDS is not progressive.

- Post viral POTS and teenage POTS tend to improve over 2-3 years.

- POTS due to EDS tends to be a life-long chronic but stable condition, many people reach a level where they can function but have flares when their body is under extra stress.

I think that whoever wrote / edited the article has tried to simplify several statements into one and the result is a mis-leading confusion! Please don't worry, the majority of people with EDS and POTS do not get worse, but we are less likely to fully recover than other people with POTS. With the correct treatment many people with POTS and EDS lead happy fulfilling lives (and many are now too busy to post here so we don't get to hear the sucess stories as often as we hear the stories of those who are still struggling with symptoms).

Flop

The vagus nerve wanders all over the body (named vagus from the Latin for "wanderer" as in vagrant). One of the places that it innervates is the rectum. Trying to pass a firm BM stretches the rectum and stimulates the vagal nerve which then triggers the syncopal episode.

As Julie said I think the best way to improve your symptoms is to try to improve your GI system. Have you ever tried a pro-kinetic treatment such as tacking erythromycin long term (an antibiotic that causes most people to have diarrhoea as a side effect as it speeds up transit through the GI tract).

In the UK the most commonly prescribed treatment for constipation is lactulose (fig syrup) it is what I was given during my recent hospital stay when morphine meant that I hadn't moved my bowels for 10 days. There are lots of other laxatives available that work in different ways (stool softeners, bulk forming, osmotic laxatives and stimulant laxatives). If you are very backed up I would avoid the stimulant sort initially as they will cause painful cramps but they may be helpful once things are moving. Initially you may need strong treatment with frequent enemas or colonoscopy prep so that you can get things moved and then use normal laxatives to keep you regular.

Sorry if this is too much information!

Flop

Hmm, difficult decision! When you get the fluttering and pain do you get any other symptoms at the same time (breathing problems, sweating, belching)? Does anything seem to either trigger the fluttering or help stop the episode? The more information you can give to your PCP on Monday will help them to decide which sort of doc you need to see. Sounds like a GI referal would be perfectly sensible but they may want to check out your heart too so don't be suprised if you get sent to both gastro and cardio doctors!

I hope you get this figured out soon,

Flop

I had the saliva tests for adrenal function done about 18 months ago. All 4 of mine showed low levels but at least my early morning result was slightly higher than the others. My doctor totally dismissed the tests "not a proper test" but I think that there is some correlation with the blood tests I had. In 2005 I had a synacthen stimulation test, my baseline cortisol was above the normal limit but my cortisol only rose by a small amount after the synacthen injection (test was interpreted as "normal"). A few years later (same time as the saliva tests) I had a baseline 9am cortisol blood test, it was just below the lower limit of normal (interpreted as "normal"). The doctor didn't see a problem that my 9am cortisol had changed from nearly 1000 to barely 500.

The book mentioned above is an interesting read. One theory is that when the body is under stress (eg from illness) that the adrenal glands produce extra cortisol. Ongoing stress causes long-term high cortisol levels (might be what was shown on my stim test in 2005). Eventually the adrenal glands can't keep up with the demand for cortisol so the levels drop below the normal healthy range.

The practitioner that Did my tests was treating me by changing sleep patterns, reducing stress, eating properly, gentle exercise, vitamins and supplements to assist the adrenals. She did not use cortisol or adrenal gland extracts for me (but did say they were options if things got worse). I found that a lot of what she said made sense and fitted with how my body was reacting, but she was really expensive to see and I couldn't afford to keep paying her fees for treatment, nutrition and exercise plans. If money were no object I would have continued with this holistic route.

Flop

Acupuncture is a complex medical treatment that is used to try to restore and re-balance the energy flow through the body. I first received accupuncture treatment from a physiotherapist over 10 years ago for chronic back pain (now we know this was due to EDS). That treatment was very helpful for pain relief and reducing the muscle spasms that I was having.

More recently I have received acupuncture from a Chinese medical practitioner (along with herbs). The treatments have been very different depending on what he was trying to treat in that session. Initially he used a Japanese technique to bring a wave of energy/heat up from my feet to my head then back down again (he described it as a sea wave washing over the uneven chaotic sand and leaving smooth sand behind). Those treatments felt wonderful but left me feeling exhausted and in need of lots of sleep right afterwards.

I also had a session for a sinus infection - that was not plesent and made me quite jittery and dizzy but it did help clear a lot of infected gunk.

What I am trying to say is that one acupuncture treatment can be totally different to another. Find a practitioner (or supervised student) who has a good qualification and is willing to work with you to try to balance and not upset the autonomic nervous system. In the UK some doctors offer acupuncture but I know their training is only 2 weekends which is totally different to the 4 years training that Chinese practitioners undertake - it is just like finding a good doctor, worth spending some time finding a practitioner that will work with you.

Flop

During my recent hospital stay I was having lots of fainting episodes. The nurses were afraid that I would hurt myself so made me stay in bed and often be pushed to the bathroom in a chair. When my cardiologist came to see me he was mad that I had been on bedrest and confirmed that bedrest is really bad for POTS. He said I must sit out in a chair as much as possible and stand / walk regularly (obviously this is relevant to someone like me who was walking about until a week earlier).

When I was first diagnosed he told me that even when I am ill with the flu I must force myself to be upright with my legs down for some time every day. Otherwise he thinks that my BP receptors will re-callibrate to the BP needed when lying flat and that I would find it much harder to be upright when I next got up. If your BP is set to a lying flat level then you need to gradually re-educate your body to tolerate being upright. For some this means gradually increasing the angle of tilt on their bed, or the angle at which they can be propped up in bed. If one can sit in a chair then the next step is to stand up for increasing periods of time.

Everything to do with re-conditioning our bodies to be upright takes time and needs to be repeated many many times to help our bodies to adjust. Most people find that they can only manage this sort of rehab with the help of water, salt, compression and medications.

Good luck with your physio ond occupational therapy - it will be worth the effort!

Flop

I think it would be hard for you to be at work without your sister unless you can tell someone else about your health problems. If you want to keep the extent of your problems hidden then it is probably best to take vacation at the same time as your sister. Otherwise I would advise that you confide in a co-worker (maybe your sister would help you explain to them?) so that they could be your inside-helper if you were too sick to manage alone.

Hope you find the right solution,

Flop

Ideally florinef should be tapered, but as in Mack's case going from 2 tablets to 1 tablet IS tapering, ie he didn't go from 2 tablets to none.

I have had these weird spikes in BP and for me they don't seem to be related to florinef. However when your BP is high you don't want to continue taking a lot of florinef unless your dr tells you to.

I was in hospital until a couple of days ago and having lots of blackouts despite having a BP of up to 140/95. My cardio saw me and put me back on fludrocortisone 0.1mg daily (until 18 months ago I used to take 0.3mg daily, then I came off it due to high BP and improved symptoms). Despite having BP spikes he says that my BP is dropping a lot when I stand up so he wants to increase my blood volume with florinef and slow sodium 6g/day to stop my BP from dropping, he thinks this will also help reduce the spikes in BP.

Flop

Oooh - I get a tingly / itchy feet thing too! I had always blamed it on my feet being encased in compression stockings and MBT trainers though.

Flop

Oops B and ) combined make a smilie!

Hi Tilly,

I do have a nebuliser that I have used when my asthma is really bad - however the dose of salbutamol in a neb is either 2.5mg or 5mg. The dose in one puff of a standard MDI inhaler is 100 micrograms (much smaller). I find minimal problems from my inhaler but that a neb makes me quite tachycardic.

I think that your asthma nurse may well be correct in suggesting a daily inhaler to stop these flares from happening. There are 3 classes of inhalers for asthma:

A) Relievers - relax the muscles in the airways to give rapid relief of symptoms, act for a few hours, eg Salbutamol (Ventolin), Terbutalin (Bricanyl).

Preventers - to reduce inflammation and prevent asthma attacks, usually steroids, eg Beclometasone (Becotide), Fluticasone (Flixotide).

C) Protectors - long acting versions of relievers (no good for emergency use though), eg Salmeterol (Serevent), Formoterol (Oxis, Foradil)

B+C) Combined preparations, eg Fluticasone + Salmeterol (Seretide), Beclometasone + Formoterol (Symbicort).

The inhalers in group B shouldn't have any effect on your heart rate so that is probably what your asthma nurse is planning. Sorry I seem to be a bit of a geek regarding asthma treatments but I used to have very troublesome asthma and I'm the sort of person who reads everything available! The Asthma UK website is a good resource.

Flop

Hi Mirry,

the actual Rare Disease Day is on 28th Feb so I guess that it will be in one of the local papers on or near that date. The organisation is for all rare diseases so if you know of anyone near you with other rare conditions that would like to take part let me know and I can get the contact details for them.

Flop

Hi Noreen,

welcome to DINET! I'm sorry that you need to be here but I hope that in no time you will be part of our family. We are a friendly if slightly mad/quirky bunch but we are all here for each other. You will find lots of information on the main DINET web site (link top left of the screen) and also by reading old threads on here (you can use the search function to look for specific things). However if there is anything that you can't see or are still wondering about just post a question and the chances are that several of us have come across the same issue at some point!

Flop

DINET moderator

Hi everyone,

I am involved with an organisation that aims to raise awareness and campaign for better research and facilities for people with Rare Diseases in the UK. They are having a National Rare Disease Day on 28th February 2010 and are aiming to get information in as many different media sources as possible. They have a space in a local newspaper for the Chichester area and are looking for someone with a rare disease to be interviewed about living with a rare disease and have their photo in the paper.

If you are from Chichester please PM me if you would like to help with this campaign.

Flop

For kidney function and fluid balance issues you are probably better seeing a nephrologist. Urologists are the people to see if you have a problem with the actual plumbing of the kidneys / ureters / bladder / urethra like stones or narrowings.

Flop

The pain may be due to spasms of the gut. Sometimes if things have been a bit stubborn the gut really contracts to get things moving and you often end up with diarrhoea.

I often get severe gut pain out of the blue - I will double over with pain so bad I can hardly breathe and have to dash to the loo. Usually moving my bowels relieves the pain. My GP said that if I had pain lasting longer then he would prescribe Buscopan (hyoscine butylbromide) to relieve the crapms.

Flop

Interesting reading! My suspicion is that (like POTS) CFS / ME is actually several different conditions that give similar symptoms. This means that the research can be biased depending on what the research group choose as the criteria for patients to be included in a study. I suspect that some of the studies claiming benefit from "rehabilitation therapies" had groups of patients more likely to benefit from that therapy.

I have had 2 friends with diagnoses of CFS. One was only 14 when she became ill. She ended up bedbound at home for nearly 3 years but gradually improved. Now in her mid-twenties she is dashing about with a busy career.

My other friend was 20 when she became ill. She was a typical "type A personality" with a natural stubbornness and obsessive compulsive tendancies. Following a viral infection she developed the classic recurrent sore throat and swollen lymph nodes with bouts of debilitating fatigue. As she improved from each illness bout she would thrn rush about like crazy, working overtime at work and trying to do far too much. Predictably she would then have to spend several days in bed before starting the mad rush again.

For her a graded exercise programe worked very well. She was put on strict rest (no exercise) for a week. Then she had to use an exercise bike on a very easy setting for 60 seconds a day. Each week she was allowed to increase her exercise by 1 minute. After following this program for 9 months she was almost totally recovered and went back to college. She is now teaching full time and has not had any relapses.

I think that the reason GET worked for this friend was that previously she had ignored her body's demands for rest and tried to do far too much. By being forced to slow-down her body was able to heal.

From just knowing these 2 people and how differently they both eventually recovered I am convinced that there isn't a "one approach fits all" for CFS / ME.

Flop

I used to ride a little in my teens and would love to do so again. It is just so expensive and for safety I would need to have lessons in a school not hack out.

Flop