Madwife

Hi Jacqui,

Just to let u know Cyclizine is also known as Valoid.

Some other good ones are:

- Promethazine Hydrochloride

-Chlorpromazine Hydrochloride

-Metoclopramide Hydrochloride aka Maxalon

-Odanestron aka Zofran

Hope this helps x

Angela,

Sorry to hear your not feeling great, however in my professional opinion I agree that a lumbar puncture should not cause a pyrexia (fever) if the correct aseptic procedure was followed.

Take care x

Melissa so sorry to hear your not feeling great, keeping you in my thoughts and prayers x

I'm a midwife!!

It was actually during my midwifery finals that I first collapsed and ended up in hospital for nearly 4 months after continouos seizures, cardiac arrest, e.t.c. and was finally diagnosed.

It took a fight and a lot of determination to return to my midwifery and indeed at times it has been one constant fight to keep hold of my career but I have done so and intend to keep proving them wrong.

There is only one ward on which i find it impossible to work and this is due to the ergonomics of the ward more than anything, i.e. beds too close together to enable me to get in a chair to the bedside for use when assisting with breastfeeding. I do have my own chair, baby changing station, stool that were provided for me by disabled access at work which all help a great deal in enabling me to get through a shift with as little pain as possible and remain standing!!! There are other restrictions to do with hours that are placed upon me by occupational health but these are for my benefit and stop managers trying to constantly push you too hard.

My main battle has been trying to gain understanding and prove that I am fit too work and am not a complete freak as some seem to think ( Yes it's quite sad that particularly colleagues with a medical background who should know better can still treat you this way).

At the end of the day it's being able to maintain this form of independence that keeps me sane and I consider myself so lucky that I am able to do this. I admit that the majority of times life does just consist of work and bed but it's worth it.

Good luck to you for the rest of your studies and hopeful future career.

Whoops hit the wrong button, half way through a night shift and can no longer see straight!

As I was saying they think I may have AMYLOIDOSIS which is a protein that deposits upon the nerves and causes the damage, if this is the case then it will likely require chemotherapy and possible stem cell transplant. Anyway I find out the results on 31st October, so keep your fingers crossed for me please.

Is interesting to see just how many of us have developed some form of sensory neuropathy, there has got to be a link somewhere.

Anyway take care x x

Hi Guys,

I too have peripheral neuropathy, which has gradually got worse over the past 2yrs. It is worse in my feet where I also experience the intense burning pain. The numbness continues upto around calf level. My hands are 30% affected which is not good for me as I am a midwife so am desperately seeking a cause and hopeful cure or at least stabilisation. My neurologist is under the impression that I may have AMYLOIDOSIS

Hi,

I think you should probably get this checked out or at least noted as this is how my peripheral neuropathy started with me just in the toes and I ignored it till it gradually got to a point where over 2 yrs it is now in my feet, lower legs, hands and arms. Nerve conduction studies can confirm wether it is this or not. I am currently undergoing investigation for amyloidosis related to this pain.

I hope this resolves for you soon!

Take care

My hope and thoughts with ur famiy Julia.

Oh Persephone, I know exactly how u feel...I can always tell when I'm becoming run down as the first thing that tends to kick in is the chronic aching and nerve pain with the M.E side. Does it only occur with hypotension or could it be that u too are becoming run down if u aren't eating and sleeping too well. I know it's really hard for u.

I'm sending u big hug but won't squeeze too hard cause it b***** hurts!! I'm just starting my night shift feeling like an eighty year old and walking like i'm drunk, with a support brace on my back in order to try and keep me a bit more upright during the night! lmso! I'll send it ur way when my shift over!

U take care babe...I'll keep my eye out foe some caring men to come and give us a gentle massage!!! he he x

Alicia I'm sending u lots of hugs it is so hard, especially when left alone to deal with it all. I know so many women have experienced what we have but it is just that more difficult when u have chronic illness to deal with aswell. Thank u for sharing ur experience with me and ur kindness. I too hope that u will find happiness and that u experience the joy of motherhood when the time is right. For us that time was just not meant to be now, it is hard but we have our little angels up there being cared for untill we can be with them.

Take care x

Guys thankyou all so much for your kindness and support it means so much knowing i'm not totally alone.

It's a really busy shift here tonight so in some ways it helps not having the time to think too much but it's also very hard. Have not had any sleep today so am struggling POTS wise tonight but I know I will make it through knowing u guys are out there. Once again thank u too everyone who has taken the time to send there hugs. Love u all x x

Roselover thankyou...it helps to know someone is there in spirit with me. I have an hour left of my shift but I know that sleep will not be happening today and I am back in for another 12hrs tonight so dread to think of the POTS hole I'm gonna end up in but I know no way round. Just wish there was someone at home waiting for me to talk to and hug...but there is no one and my family don't live close but I can't talk tothem no more as they can't understand why I have not got over this. Maybe i have made this into more of a drama than it should be to them but it hurts me beyond belief and I don't think I will ever forgive myself.

Hi all, I'm so sorry to come on and moan as I know we all have our hardship's but I am really struggling emotionally today and jus need some of ur guys wisdom to get through...

Today is the 4th December the day when my baby would have been due...an unplanned pregnancy and was taking oral contraceptive pill but however I fell pregnant. At 16 wks pregnant I found that the baby had suspected severe spina bifida as a likely result of some of my medication, and with a history of previous cardiac arrests I was told it was unlikely that I would reach 24wks gestation without a further cardiac arrest, obviously putting both my own and my baby's life at risk...I was therefore strongly advised to terminate the pregnancy. This was the hardest decision I have ever had to make in my life but after hard consideration of all the factors such as my illness, the fact that I was now on my own as my partner walked out on me upon finding out I was pregnant, and the possible difficulties that my baby would face I took the decision to terminate. It was a decision that broke my heart and sent me back into depression.

I am sitting here tonight in the midst of a night shift working as a midwife looking at all the beautiful babies that surround me and I just want to scream and run.

I am so privilleged to have been able to maintain my dream and return to working as a midwife, when i know so many of u are bed/housebound and I do know how lucky I am but I am finding it really hard.

I still feel so guilty about my decision and feel I have no right to wonder what if...but I do. I so long to be a mom and tohold my baby in my arms but i don't know it is something I will ever deserve.

I just feel so lonely.......

As ever Persephone u are an inspiration, and I am so glad that u have somewhere and someway of escaping our POTS hole once in a while and can find the true happiness u deserve!!!

Hi Sue! Sorry to meet u this way but I can assure u that this is a great place for support and understanding. I'm Zoe, also in the UK! Sorry to keep this short and sweet but feelin rough tonight trying to struugle through a night shift at work but just wanted to say hi and welcome!

Hi Jessica, Nice to meet you and welcome! Sorry ur having to join our potsy group but you will find great support here!!

Hi Jennifer...As a midwife with POTS and the rest I would say to you that this is something you need to discuss carefully with both your consultant who is dealing with the POTS side and an Obstetrician. It is true that POTS can be exaberbated by pregnancy and childbirth but there are lots of things that you can do to prevent this from happening as far as is possible. If I can be of any help please don't hesitate to get in touch.

Good luck in ur decision making!

Take care - Zoe x

Well done Ernie, good on ya! I hope u are as proud of yourself as we all are!!

Oh Melissa, sending u a big hug.

Melissa I do know and understand how hard this is for u right now and being another stubborn minded person how much u are beating yourself up. U listen though when we all tell u how proud of yourself u should be for what u have achieved to date. I know this does not make things any easier but u hold an enormous amount of strenght and courage in just being able to admit that this is not a realistic possibilty at this point in time for u but that u also had the courage to give it a go. If u hadn't u would still be beating yourself up for not trying.

My illness kicked in during my final midwifery exams, leaving me in hospital for four months, paralysed for eight months and two cardiac arrests. I had to lie back and watch all my friends graduate and finally start their careers for which we all yearned for so long. This was so hard and I was so jealous. At the time they couldn't tell me if I was ever gonna be able to sit up again let alone walk...anyway here I am four years down the line, 3 cardiac arrests later and still here to tell the tale that I have now reached my dream and work as a midwife. The point is that it took a lot longer and a lot of fighting to achieve and still does but I got there and SO WILL YOU!! I am a true believer in fate and I know this is so hard to accept at the time but there is some reason why this is not meant to be for u at this particular moment and the outcome will be positive and I know u will achieve ur dream one day in the future.

I just want u to know that myself and all the others are thinking of u and sendin positive vibes ur way to help u through this time. U try and keep hold of that stubborness as that will give u the strength to keep on fighting!

U take care babe and just think when u get to the end how much compassion u will have for ur clients because u have been through the rough times to and will hold an understanding many don't have.

Hi ya! I suffer with this permanently at the moment and it is known as peripheral neuropathy. Have u had ur bloods checked recently? One of the main things to look for is a vitamin B12 deficiency. It's worth having it checked out anyway! Good luck & take care.

How funny....it reminds me of a song by an old british group with the words....everybody get up, sing it, everybody fall down now!

Think this would have to be our mascot song for the evening!

Sorry guys but if we can't laugh at ourselves we'd end up crying constantly! U've gotta admit we would all be an unbelieveable sight in one room!

Oh Emily you've brought a tear to my eye, as i'm sure we all do it's because we know where u r coming from and it is so hard to see others going through the same! Keeping u in my thoughts and prayers...u hang in there hun but know it's hard...u will dance again!

Hi Jen!

Mine is through medic alert and states POTS/Dysautonomia...Prone to collapse and seizures...Please administer IV glucose if hypo and saline stat. Allergic to anti-emmetics.

I tend to become hypoglycaemic followin seizures hence asking for admin. of IV glucose.

There is a contact number which allows access then to further medical details / allergies / emergency contacts.

Hi there!

Not much to add but I always get sharp left eye pain prior to collapse and this continues for a couple of hours following!

What wonderful and weird beings we are!!!

Hope u have some luck with neurologist.

Take care.

Melissa how awful for you, I would be pretty upset, angry and aprehensive too! Don't you just love these people who think they know it all, but in essence should supposedly know better! Well I hope things improve with her and am glad to hear things are goin well otherwise with ur classmates and that e.t.c.

U take care.