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I have been diagnosed with migraines for the past 3-4 years and i'm convinced there is something else going on with my body due to being so sick all the time. Anyone who knows typical of symptoms of CFS I would really appreciate to hear from as I am desperate for answers and help to get better. I've suffered the following for the past 3-4 years:
-Nausea every day, severe nausea when getting an "attack" which sometimes leads to vomiting. Leads me to be bed ridden lying as still as possible.
-Needing at least 14 hours sleep in order to attempt to get out of bed.
-Flu like symptoms, pains throughout body. 1-3 times a week and bed ridden. Can last 2-7 days.
-Exhaustion to the extent where I cant walk or talk. Triggered by eating, walking for 5-10 minutes, talking for more than 10 minutes, concentrating for more than 10 minutes. I used to be a figure athlete and now I can't even exercise at all.
-Headaches that are daily and only become severe 1 or 2 times a month generally with the flu like symptoms.
-Lipomas on arm
-Ear ringing, like underwater, daily
- Visual disturbances daily
-Heart palpitations and chest pain, tends to come in clusters then disappear for a few months
-dizziness and fainting sensation when resting
I rarely get respite from the nausea and exhaustion that are ruining my life. Ive had to stop work as I was sick every single day, every night, every holiday, every weekend bed ridden.
I'm confused with the migraine diagnosis as being the sole diagnosis due to migraine symptoms not being the worst symptoms that are debilitating me and the frequency of the symptoms. I'm sick every day, exhausted, spend most of my time in bed. I get the odd few days here and there where I'm ok but other than that I'm really suffering.
Please help if you know what this could be.
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Hi, I was diagnosed with vestibular migraine nearly four years ago. I too have a lot of the symptoms that you mention. Last week I saw a neurologist who informed me that yes whilst some of my symptoms are typically migraine not all of them are and that I have CFS. I was really surprised as GP after GP has told me it's "just the migraine causing it". The neurologist also had an MRI head and cervical spine done to rule out anything else, currently awaiting those results as only had it yesterday. I'd say ask for a referral to neurology for your own peace of mind.
Thanks for commenting. I've also had mri, brain scan, ct scan and lumbar puncture to rule out stuff, and im sure your results will come back fine. I'd be interested in how your case unfolds, so keep me posted. I'm already under a neurologist and sent an email today to explain my concerns and an appointment in January to discuss everything. I'll let you know how it goes. Good luck with your results xxx
The best thing is to discuss everything with your neurologist and if you are still not happy seek a second opinion. Is good your scans etc came back clear. I presume you have had a full blood work up too to rule out other things.? Have you had any cardiac investigations ?
Migraine can be constant and debilitating.. Before ME I used to get it fairly often. Then after ME diagnosis 21yrs ago I had it constantly for well over a year. I was put on gabapentin for nerve pain . it did virtually nothing for that but was a miracle for my horrid migraine . I never get migraine but sometimes have a cluster headache . which is more to do with my light sensitivity . or if I am very stressed. I often feel dizzy and feel sick most of the time and get full blown vertigo at times. I have IBS, cognitive issues, constant fatigue, constant muscle and joint pain , intermittent some days constant nerve pain, food intolerances, drug intolerances, tinnitus, I am housebound .I also have atrial fibrillation and fibromyalgia.
You certainly have many of the symptoms of Cfs\ME. You need to be referred to someone else if you feel your current drs are not helping . take care and I hope you can find some relief soon x
Janet--I'd had cluster headaches since the age of 14. Then, after a few years of ME/CFS...no more clusters, for which I'm eternally grateful. I'm sure it's to do with how the brain is affected by ME/CFS. By the way, I also have constant nerve burning and tingling (since my relapse 3 years ago), cognitive issues, as well as tinnitus and, of course, debilitating fatigue. I'm also housebound. I'm hopeful for the first time in the 15+ years that I've been ill that ME/CFS is being taken more seriously. I think the documentary "Unrest" is having a major effect in getting the word out. The filmmaker is partnering with some major research institutions here in the U.S., like Stanford's Open Medicine Foundation.
Unknowingly or not. Almost everything You mentioned as what You also suffer from could be the side effects from gabapentin! I suffer a lot of the same things! As I'm withdrawing from My dosage the side effects are getting better. Wow! The difference in My cognitive is astounding. I can speak for myself again and have more short term memory! Everybody I know notices the difference. Good luck!
I dont take gabapentin, i take other medicine for a different illness. The medication i take for what i'm told is 'migraines' is amitriptyline. This seems to have improved symptoms slightly.
I am unable to undertake any physical exercise as this will result in me being bedbound for anywhere between 2-7 days. After this the recovery period is usually about 4 days where i might be able to watch tv for short periods and cannot walk or stand for more than 30 seconds without needing to lie down. Any effort in trying to fight it results in another serious attack.
Thanks for your insight, this might be helpful to my friend who takes gabapentin for fibromyalgia. She is the only friend I have left.
Hi Jackie. Isn't the nerve pain horrendous ! I had shingles a few years ago and still get pain over the area. What with that and the nerve pain from cervical spondylosis and sciatica and back nerve pain ! Arghhh like being sired up to the mains !
Good to hear your cluster headaches stopped .
Unrest is currently showing over here too in the UK. I certainly hope it makes the government etc take it more seriously.
Take care x
No blood work has been done and I've had a chest x-ray in 2014 when symptoms started, and heart monitored briefly for 10 minutes. I have been thinking doctors think im crazy and just want to give me an answer to shut me up. I've been so depressed and alone, but I'm ready to fight more than ever so that I can give my baby an amazing upbringing. I worry now about how I will go through labour, not pain but how i will push through an attack!! After everyones comments it's given me more courage and confidence to push for further investigations and answers. Thanks to everyone who has took time to respond, I really appreciate it. Thank you
I have had several breaks off gabapentin . at least six months at a time because it was thought to be the cause of my neutropenia and low platelets. And I resumed it only at half the dose I had previously been on. Non of my ME symptoms improved . infact my mood was down and I felt anxious a lot of the time. Headaches increased . my cognitive issues and short term memory did not improve at all. I have been on a low dose for a few years now. I was tried on pregabalin at one point by my goodness how dreadfully I reacted to that. And slowly came off it but I thought I was dying it was so bad.!
I cannot tolerate pain killers so don't take them.
Good to hear you are feeling so much better off gabapentin, but I am sure it is not causing my symptoms. I had them long before I had any gabapentin . take care
It is important blood tests are done to rule out various conditions etc. Especially when symptoms have gone on continually for a while with no real let up. Heartwise 10 minutes of monitoring is nothing. At least 24 hours of continual monitoring is needed in order to pick up anything abnormal. And sometimes longer. I have had a few 24 hour tests and one where I had a monitor on for week. Then a further week as the monitor was faulty. So I had it on for two weeks. Once had both a heart and a blood pressure monitor on for 24 yrs. Lol one either side of my body . all tests done at home .
I can tell you are determined to move forward. It is very frustrating when you feel no one is listening to you. We have all been there many times. I never like to tell people what they should be doing , but would encourage you to challenge your Dr. I was fobbed off by a locum GP for a while until I requested a referral. He reluctantly referred me as if I would in turn be told there was nothing wrong with me by another Dr. The consultant endocrinologist I saw had a special interest in ME. He had his own clinic for his ME patients. He spent two hours on my first visit to him. He ran loads of blood tests , chest x ray and MRI scan. To rule various things out. He worried I might have MS. Before confirming I had ME. It wasn't until several my are later when I finally saw a cardiologist the GH and had all those tests.
Only you know how you feel. So for you and your baby , you go for it . take good care x
I don't take any medication not even paracetamol so definitely not med related for me.
Your symptoms sound very much like ME/CFS. Go to the "solve me/cfs initiative" for more information. In the meanwhile, pace yourself, get plenty of rest, and don't try to push beyond your energy envelope. If you live in the U.S., I can give you the names of doctors who are knowledgeable about this illness.
Thank you for your response. I live in the UK. I've questioned the diagnosis and symptoms in many appointments but I just get cut off with 'sounds like migraines to me'. I've been suicidal with how sick I feel every day, like I'm on my death bed! I'll be going to my next appointment ready to question and not be dismissed or cut off anymore. I can't carry on like this anymore, I have a baby on the way so I need to know whats going on with me so I can take care of my little one.
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
I'm very sorry you're so ill. Is there any way you can get referred to an ME/CFS specialist or clinic? GP's or other doctors tend to be uninformed about this disease. Migraines are quite common with ME/CFS. Since you have so many other symptoms going on along with the migraines, it sounds to me like ME/CFS should at least be investigated as the possible cause of all the symptoms. Please know that you're not alone. Many of us here on this forum are dealing with similar symptoms, and with the insensitivity of the medical community. There is currently a lot happening with new research and awareness of ME/CFS. The movie "Unrest" has helped. Keep posting here and let us know how you're doing.
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