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Is This In My Head Or Is It Pots Like I Believe?


blobbydodger
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Hi there i'm new here but really need to share my thoughts and experiences with someone as i feel like i'm going to go mad if i don't.

I'm 39 years old and i remember when i was at high school in the last few years i suddenly became very tired all the time, i would only get comfort and feel better for some strange reason when i crouched right down in my chair at school. I found myself sneaking off to the library at school where they had comfortable couches so i could really slouch right down into an almost horizontal position.to make myself feel better. I eventually got into trouble for skipping lesson and was dragged into the office and asked if i was on drugs or drinking because as they put it i had changed and looked like i was living in a daze all the time. Fortunately for me school didn't last long after this but i did keep going to my doctors time and time again complaining of extreme fatigue but they kept on doing basic blood tests and telling me i was fine. I remember for years i would feel tired nearly all day long but feel a little better towards the evening for some reason. This was hard because i would get dragged out shopping through the day by my girlfriend at the time and i would hate walking around malls and shopping centres for hours feeling like the life had just been drained from my body. I felt like my head was really full if that makes sense and i got dizzy frequently.

As i got older i started to associate the symptoms with being upright and felt awful when stood in a que for the cinema or at a shop, if i was outside and had to stand or wait for someone i would have to prop myself up on a lamp post or a tree for some comfort because my chest would feel uncomfortable.

I suffered with this for many years and continued to go the doctors on numerous occasions but still they found nothing and started to make me feel like i was imagining things.

I then started with IBS type symptoms and have had urinary problems where i can't seem to hold onto any fluids at all and just keep on urinating, iv'e also had sexual dysfunction at times for no apperent reason. Iv'e had test for Diabetes insipidus for the urinating but that was clear iv'e see a gastro and had numerous scans for the extreme constipation i suffered and thet were clear too.

It came to a head when i went to bingo one night and fainted whilst in the room when i stood at the fruit machines watching my partner play, i was taken to hospital and was kept in the heart ward overnight, i was then referred to a specialist who just looked at my notes and said i had a high heart rate when standing, he said he could do more invasive tests if i liked but felt it wasn't anything serious and that it would be best for me to "see how i went"

I passed out again a few months later walking around a market but this time i didn't bother with the hospital as i felt they wouldn't be bothered anyway.

At the age of 37 i developed a really bad parasite infection and lost serious amounts of weight and my doctor thought i had cancer, he did many tests for cancer and they came back clear....i found out myself i had parasites and treated it myself and started to gain weight. I told my doctor and he quickly took credit for finding out even though i did it myself which was weird.

He then said i should start to feel better soon. I kept going back saying i was still incredibly fatigued and had started to feel very dizzy throughout the day. I also told him i was getting tingling sensations in my arms and that i felt generally weird and not myself.

I explained i had headaches that wouldn't go away but he thought it was all down to stress ad anxiety and prescribed antidepressents.

I have had years and years of knowing my heart rate goes up when i stand and feeling unwell but i never thought there could be a link and my gp has never suggested it either.

I decided i had had enough and paid to see a private neurologist to see if he though i could have MS due to my weird sensations, he didn't do any test other than the touching the nose and walking in a line etc but assured me it wans't MS, i do believe he was correct though as he seemed to be an expert in MS and said i could have a form of restless leg syndrome.

I told my GP who wasn't happy i went private but prescribed me treatment for the restless leg syndrome but it didn't do anything and i still get these tingles and weird feelings.

I then started to research like mad and found that POTS is a possibility as most of the symptoms seem to fit. I paid again to see a private Pots specialist who was a fantastic guy and he said he thought it would be a good idea to get checked and have the proper tilt table tests etc. He really put my mind at ease and i have an appointment in April at a pots clinic near me.

I really hope i find this is the answer for me as i have suffered for years and it has come to the point now where i have headaches everyday and keep getting confused and have a brain fog, i go dizzy a lot and my legs go weak like jelly and i only find relief if i lay down for a while.

Sorry to ramble i just needed to get this off my chest as it seems nobody believes me and even my close family are sick of me complaining and think i imagine everything because i am always at the doctors, (i will be though if they aren't doing anything)

I'm not mad i just don't feel right and it hurts soooo much when my partner who is a great person tells me shes sick of me moaning and its all in my head. Its not i know my own body and i know something is not right.

I might add the only time in the last 15 years+ i felt ok was when i broke my wrist and was prescribed tramadol, i only took a small dose but felt fantastic for a while when on it but when i came off it things went back to normal....could this be down to the SNRI effects it has?

Anyway thankyou for letting me join this amazing site, you guys are fantastic. :)

ps so sorry for the bad grammer and spelling mistakes, it's late and my heads pounding

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Just to add when i went to see the Pots specialist i took a few weeks worth of heart rate recordings with me and they were on average around 65/69 laying down and 110-120 stood up but these figures were recordered if i had only 6 hours sleep, if i had more than 8 hours in bed the heart rate would rise to over 150 frequently when stood and if i had a heavy meal it would be over 150 stood up too

And i don't know if it could be related but on i private blood test i paid for recently (again trying to find out whats wrong as my doctors aren't helpful) my vitamin d levels were classed as severely deffiecient

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You and I have some similarities.

And you are not crazy, or on your own. There are many people here that can relate.

I saw where some other members were deficient in vitamin D. I do not think I have ever had that tested.

As far as the spelling and grammar etc. I have never been sharp, but I seam a little less sharp than I used to be. Particularly when my head is giving me fits.

I really hope that this POTS specialist can get you going in the right direction. I am sorry that you bounced back and forth between doctors for so long.

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Sorry to hear you have been through so much without answers. Based on your descriptions, it does indeed sound like POTS either with or without drops in blood pressure. POTS tends to be worse after large meals because some blood volume gets shunted away from other areas to help with digestion. I hope this POTS doc can help you out. If not, there is a list of other doctors in the UK that specialize in dysautonomia on the dinet website. Hopefully when you get some answers people will start believing you. It's really hard when the people you love don't believe you're sick.

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Welcome. It does sound like a ttt is in order. I know it's hard to wait for the doctor's appointments.....they always seem so far away. But it will be here before you know it. Have faith in yourself that you are doing the right thing. You can't control other people's feelings and reactions to your illness. You can only be kind to yourself and continue to treat others as you would want to be treated. Chronic illness does have a way of weeding out the people who don't really care about you. It's hard at first but you will eventually find an inner circle you can count on and it will be easier when you have a diagnosis. Hang in there

.

Katie

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Wow, i got up early this morning due to having a particularly bad bout of insomnia which i often get, so i turned on my laptop and found all these lovely warm welcomes and helpful replies, i really like this forum and thank everyone for helping people in similar circumstances. I will keep everyone in the loop when i visit the POTS clinic in the coming months. The wait will be worthwhile if i get to find out that all my symptoms are due to POTS and i know i will feel a burden will have been lifted.

Thanks

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Welcome to the forum! Because POTS is an invisible illness some people will find it hard to understand how we really feel. But just because they can't see all the symptoms we are experiencing that doesn't mean we aren't feeling them. This isn't all in your head, keep fighting on to get a diagnosis. I'm glad you are going to be seeing a POTS specialist, hopefully he will really be able to help you.

Best Wishes,

Lyla

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Hi blobbydodger,

There are a lot of people I see posting here and in other POTS forums who are concerned they might have POTS, and ultimately don't have the heart rate changes that are the hallmark of the syndrome. It sounds like you already have clearly seen that you do. It must be hard waiting for the appointment in April when you feel so bad. Perhaps you can try some of the non-medical interventions before then?

- Increasing liquid intake to 2-3 liters/day

- Increasing salt intake (assuming you don't have hypertension)

- Trying out a low-carbohydrate diet

- Starting a regular recumbent exercise program

- Trying out compression stockings

Good luck. I hope things improve.

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Hi. No you're not mad or making it up...your symptoms are real and we all know what you are going through. Don't despair as there are lots of things that you can do to make life easier and take it steady and learn to read your body when you need more water and rest etc.

All the best and keep in touch on here as it's a fab site

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