Neuralgia attacks ,

[Phelpsy]

for over 4 years now I’ve been having

Neuralgia attacks

since my Diagnosis with ET & Started taking HU ,

Hubby’s read that cancer treatment/ Meds can be a big trigger of Neuralgia,

It’s really getting worse over the years & more frequent , (I’m taking Amitriptlyne from GP

Any suggestions would be very greatly appreciated x

Thanks Pam x

,

[Nickthedevil]

Hi Pam sorry to hear you are feeling so rotten. I do suffer with neuralgia sometimes, especially if I get a cold (like now) but I have no idea if it’s related to our meds or not. Hope you feel better soon. Karen xx

[Phelpsy in reply to Nickthedevil]

Hi Karen have you always had it

or just since going on HU , it’s so debilitating isn’t it , it’s subsided now fingers crossed, left me with a very tender head & temple , I can be having this I look after my grandson a few days a week som day 8 am until 10 pm . Nice to hear from you ,

You take care x

Pam xx

[Sand-Dancer]

Oh Pam thats awful for you. Did you ever suffer before hydroxy? Hope you're feeling better soon! Lesley x

[Phelpsy]

Hi Lesley ,

No never I remember the first time was in Northampton in Hotel my Daughter was starting a new job we visited her

I was so unwell with it , all over can describe it as Electric shock stabbing pains , there’s also a pattern when I’m very tired / stressed , horrid it is , x

I had eye test yesterday at Specsavers because I was so worried , to check there was nothing going on in there

As they detected a tumour in my Niece 2 years ago , xx she was operated on the next day ,

( I was scared )

But thank god all is ok there x

Love Pam xx

[Tinkerbell13 in reply to Phelpsy]

Hi Phelpsy, wonder if am similar to you...have stabbing pain in eyes sometimes, but worst is in fingers, going up to hand and elbow, on one hand...excruciating. Used to blame the Hydroxy, but no longer on it, so wonder if it is actually the ET?? Best wishes to you. Tinkerbell

[Phelpsy in reply to Tinkerbell13]

Hi Tinkerbell we sure are a complicated species aren’t we

It could well be that , I would love to get to bottom of this , x

I suppose we are all still under going lots of health problems ,

Count our Blessings xx

Love Pam x

[Tinkerbell13 in reply to Phelpsy]

You are so so right about counting our blessings! Just occasionally, do wonder if certain foods make matters worse, and if using any form of 'chemical' cleaning agents....but also realise our blood disorders do cause unusual problems, too. Very useful and helpful and encouraging to share on this excellent Forum. Love Tinkerbell and please keep on letting us know how you are doing.

[Phelpsy in reply to Tinkerbell13]

Thanks Tinkerbell

I will keep you updated

Take care also

Pam x

[catwoman2015]

so sorry to hear this Pam , i have taken Am itriptlyne for years for back n nerve pains, does it depend on what cancer treatment your on do you know ? or just in gerneral ? its a nuisance if it is the HU thats making your pains worse eh , hope it eases for you asap love Holly x

[Phelpsy in reply to catwoman2015]

Hi Holly

all I do know is i never had any of these symptoms pre ET / HU

Or even my TIA but something gone wrong along somewhere,

It’s starting to settle but very sore head & temple , I wouldn’t wish it on my worst enemy 😖 x

GP or Haematologist don’t seem concerned & that’s very frustrating x

I’m going to mention this again

See what happens

Pam x

[Inca]

Pam,so sorry to read about this.Just back on line as we left Fr.travelled here exhausted,ferries cancelled (the storms)throwing all arrangements to pot,so just back on line last night.Hope you are feeling better now...interesting tho,I am having bad pains ,left of face into head and eye....seeing optician next week,bit bothered as eye keeps closing!!! Stress maybe,or the nerves from op a yr ago.....show coming up now and wondering how I will get thru it and next one.Thinking of you ,wishing you the best.,and end of pain.xxxxSally

[Phelpsy in reply to Inca]

Goodness Sally your not having much luck , I hope your pains are improving

It sure sounds like what I’ve had

My temples been very sore for weeks now

But thank god no sparking in the head

For a few days now so must be setting 🙏 , I’m definitely thinks stress doesn’t help hubby recons there’s a pattern

When I’m rundown, tired or stressed

I really hope that your starting to feel better after your travel,

Only one thing to do , your going to have to come back home 😜🏠

Big warm hugs sent your way

Love Pam x

[Inca in reply to Phelpsy]

Here now Pam,did a two day xpo ,today I am so weary ,can hardly stand,the odd thing is ,I can do my shows,talk to clients and lookers on,no-one guesses the struggle really.....then when it's over I am like deaths head at a feast.I hope you are soon back to your lively busy self.I am sure tho ,the longer we have an M P N,the more side effects or the disease itself gives us more little problems to cope with,and I too have begun to have painful feet!!! That's a new one for me...Love and best wishes from Wiltshire to the glorious North.!!

[Phelpsy in reply to Inca]

Goodness Sally your a tough one

Can you travel a bit further 😜 North we can meet up

I know What you mean regarding people not knowing how we feel , (most days I don't understand )!!!!!

I'm looking after Carter now most days 8 to 10 hr shifts .

I'm so so so tired after the little fella goes home

Sleep 3hrs on sofa & 9 hrs in my bed ,

How am I going to cope with his new arrival ( sister) in January . When daughter returns to work 😮

[Inca in reply to Phelpsy]

We are both toughies Pam,Northern roots!!!Actually I am totally gone and in bed today.We were hoping to come North to stay with friends in Yorkshire,but hubby down now as well with chest infection....we have got soft,?..not surprised you are tired after having Carter,I have friends perfectly healthy who cannot look after their grand children at all....keep going ,we M P N ers have to.xxxxSally

[Angelinagaffer]

Hi , I have suffered with neuralgia for years before my diagnosis , once I started chemo last year the pain stopped, I also get it in my feet and toes(Morton neuroma) sadly since the weather has changed the pains have started again. I use hit water a lot, either under the shower or the sink I use a flannel, I find attacks can last 45 minutes so I pace myself, cry a lot and believe it is helping!!!!!??. It is very dibilitating and sadly not a lot can be done apart from drugs getting stronger and stronger. You will get to know when the attacks are coming. the head and temples become very sensitive and keeping the head covered helps during cold weather. I find bright lights, Christmas flicking lights, head lights , sunlight can trigger mine, so I wear dark glasses, even when watching the TV,. I hope this help you, best wishes, Angelinax

[Angelinagaffer in reply to Angelinagaffer]

I find brushing my hair helps also, try not to worry, you can always chat to me, I've had it for17years

[Phelpsy in reply to Angelinagaffer]

Hi Angalinax

I read your post & thought that’s me all over , and for months now had painful feet so bad that I can’t walk indoors without any memory foam slippers on

At times , I no longer can use electric toothbrush sets my Neuralgia off

Thanks for all the useful info

Much appreciated

Pam x

[Angelinagaffer in reply to Phelpsy]

Indometacin helps its a painkiller, well like most tablets brilliant at first, ask gp.I found I was able to cut down on amytrptyline.

[Angelinagaffer in reply to Angelinagaffer]

With the feet, I found ice water helps, freeze a water bottle, and roll your feet back and forth over the bottle or cold paving. Sometimes I wonder which one is worse the head or the feet , !!!

[Phelpsy in reply to Angelinagaffer]

I found I only need at most 1 week of Amytroptyline & it does improve

But I will ask , thank you so much ,

[Angelinagaffer]

It helps the feet more than the head, best wishesx

[Inca]

Sometimes ,washing hair standing in shower relaxes head neck and helps,maybe head massage would be good. Been in U K three days now,the traffic,headlights. tail lights are a nightmare,cannot cope with it. Pam,I was actually worse before diagnosis,but stress ,tiredness,flashing lights and so on do start it off...Angelina ,how do you cope with yours,sounds very difficult....best to both xxxSally